Post Vacation

How was California, Ann?

50 degrees warmer than Minnesota, wine tastings and a taste of both mountains and ocean in one week. Now throw in a a spa treatment most days, a nice upgrade in our room with a private jacuzzi, and free breakfast delivered to you door each morning. It was a slow vacation, with few agendas and meant to be completely relaxing. 100 percent self-indulgence vacation!

We set a nice plan in place - spa, eat, taste and sleep in a setting known for relaxation.

And, for the most part, it worked out that way. But, as we are all trying hard to accept, MSA makes even the greatest plan difficult to implement without major changes.

For example, a visit to a winery.

You drive until you find one that sounds interesting, or one that you have picked out. Then you fork over a few bucks for a tasting. They pour, describe and try to encourage a purchase. You sip, discuss the tastes and toss out the extras. You either buy or you don't and you drive off to your next destination.

Easy peasy, right? But reality sets in when you put the plan into action.

First there was the bathroom - everywhere the bathroom becomes a problem. We find our first winery, and get ready for a tasting of 6 red wines. First one is poured, and Dennis has to take a poop. We make it to the bathroom just in time, and about 10 minutes later, we are back to taste the wine that has been sitting waiting for us. At least it had plenty of breathing time.

Into our second taste, Dennis says he must return to the bathroom. 15 minutes later, we are back at the bar, and Dennis is depleted from all the up and downs of bathroom life. We head back to the hotel for a jacuzzi.

Or, for another example, a spa treatment.

Normally, you jump up on the table, get massaged in very assorted ways with a variety of oils and creams. When done, you feel relaxed and rejuvenated and fork over a big tip out of gratitude for the renewed feelings in your mind and body.

Then, it is Dennis' turn for his massage. So I took my relaxed body, and shoved, and pushed Dennis up onto the table and pushed more until he was on his stomach, face in the right place for breathing. Then 30 minutes later, someone comes looking for me to flop him over. then it is up from the table and a long push of the chair back to the room. Dress both of us, feed Dennis, insert his pills, shower and dress myself, and on and on. When all is said and done, the aches in the back have returned and I am ready for a nap.

It was a great get away. I just need to accept these changes in traveling with Dennis. And I can - it's for the sake of a vacation away from home, after all.

Until later,
Ann and Dennis

Happy Holidays, One and All

Merry Christmas!

from Ann and Dennis, to all of our family, friends and followers.

301

Just a cool note to share...

This is my 301st post.

Cool, huh?

Until Later,
Ann and Dennis

Happy Holidays, One and All

Jane and I were trying to explain to ourselves why we miss Mother, more than we do Father. I believe it because we felt little responsibility for Father's life, but Mother was under our care, or tutelage, in a manner of speaking, when she died. And therefore we bare some of the responsibility.

We all "coulda, woulda, shoulda", in Mother's case. We all knew she was a klutz for most of her life-time. We all knew that she was easily led astray by her very own thoughts. We all could have done better, if we had all foreseen the outcome. We all should have been more aware of what was happening, if we hadn't all been living our own lives. We all would have done otherwise, if only we had known of the details of the outcome.

With Father, he had always been invincible. He played the stoic man; full of emotional, physical and intellectual strength that was required of a father of a boomer family. But he worked hard at maintaining his stature,and we allowed him his invincible stature.

This will be an odd Christmas - the first without a parent. While this happens to all of us at sometime, it is the first for us. We will enjoy ourselves, and we will be happy. But it will be just a bit bitter sweet as we open presents this year.

I won't be around for a week, or more. On the 26th Dennis and I are headed for a spa/resort in Napa Valley. I am looking forward to a massage and a facial. Naturally, I am also looking forward to great California wine.

Until later, Ann and Dennis

Winter Break

It's been over a week since I last wrote. I apologize, but it has been rather busy.

Dennis was in the hospital until Monday evening. He had another swallow video, and this time they are recommending thickening all liquids to honey consistency. This should cut down on his Coke intake, at the very least. They also took him off of his night time sedatives, because they seem to be causing his throat to relax too much.

The first night home was horrendous. "ur ee." "i illo uffica e." "ake eh eel air off eh ed!!" (Turn me, my pillow is suffocating me and take the wheel chair off of the bed). These hallucinations went on most of the night, and I crawled back to work the next morning.

He has improved since then. Well, he did ask me if it was time for him to go to hospice care, and other such nonsense. After reminding him that he promised he would live for at least another year, he calmed down a bit.

Then...

We went to the Mayo Clinic for a yearly follow-up appointment. After all the poking and prodding, the questioning and the tests, he was declared to be still in stage 4 of his disease. Now this is good news. Although a few of his symptoms have become more problematic lately, he hasn't deteriorated to the point of knocking on deaths door. Or, in MSA speak, another autonomic system has not been affected since last year.

This is good news to take us into the holiday season. Jane and Ralph arrived yesterday from London and Dennis and I leave for wine country in California in one week. It should be a good two week vacation for me, with my now cheered up love and family around, as well as a spa retreat with great California wine!

Happy holidays, one and all.

Until later,
Ann and Dennis

Er, again...but first a RN visit and an Urgent Care Visit

Yesterday, Dennis woke up convinced something was wrong with him. He had an appointment with the nurse practitioner at Struther's for a general check up. He mentioned he felt something stuck in his throat. Nothing found. Raquel was with us to meet the staff at Struther's and then give me a few hours for boring stuff. I warned Dennis that I would prefer that he dealt with his health earlier rather than later in the day.

After the appointment I went grocery shopping and Dennis and Raquel went to the Courage Center. Halfway through the grocery store, my cell started ringing. Raquel requesting that I meet she and Dennis at Urgent Care. I finished my shopping, put the frozen and the fridge items away, and headed back to the clinic. Good, Dennis hadn't waited until 9 pm to deal with his recent problem.

UC found some possible concerns, but "just watch your breathing, temp and sweating" (and decide if you are sicker that I think you are and hope your insurance will cover your current problem...and other such cynical stuff) was the answer. With another prescription for an anti-biotic in my hand, we headed home.

Dennis went to bed and I decided to have a bottle of wine...

Then, just when I tucked myself into bed, was nice and comfy in Minnesota winter, a bit drunk on wine, this is when Dennis decided we needed to call 911.

It's not cheap to call 911. At least not under my insurance plan. And right now we are in another insurance change - my employer (wow, 900 a month for shit!) to medicare. More on this later, I know.

But when Dennis decides that he wants to call 911, I dial that phone. The last few times, he fought me tooth and nail.

So the ER for three hours, then a decision to keep him over-night, and I finally get a good nights sleep.

More to come.

Until tomorrow,
Ann and Dennis

Sunday

After a long two weeks, I spent the majority of Saturday in bed. I had planned on painting, but didn't have the energy to pick up the brushes and put the paint on the canvas. Today, I woke, refreshed and started the day out painting.

For the past 4 months, Sundays have been hectic for me. First I had to get myself ready, then Dennis, then pick up my mother to bring her to our place. Often she would need to stop at a grocery store or Walgreen's along the way. Then I would make lunch for the three of us, watch football (yuck, yuck and double, triple yuck) with Dennis and Mother. Sometimes Hamed and Ashley would join us. Then it was clean up, and return Mother to her apartment, do some chores around her apartment, and then return home to take care of Dennis. Whew. I am tired once again just thinking about this routine.

This Sunday I am experiencing very mixed feelings. Two weeks ago is when Paul was here and Mother was found dead. All that drama is something I am having a difficult time getting out of my head. Last week was not about Mother, but Jane and Ralph came over, so it wasn't quite like this Sunday.

Today, the morning was leisurely. Dennis slept in so I was able to get 2 hours of painting in before getting him ready. I made breakfast and Dennis retired to his room for a few hours while I played on the computer and listened to acoustical Sunday on Cities 97. Then, around 1:00 we headed to Bunny's for bar food and a beer.

Dennis and I had a few short conversations about Mother and Sundays at Bunny's. I expressed my mixed emotions - having Sundays back again and at the same time wishing Mother was still alive. Dennis told me how he hated when his parents took him to a bar to eat, and I told him we never were inside a bar as kids. He then wondered what his life might have been like if he had the opportunity to have good parents like I did.

I guess I really am one of the lucky ones in this world. My parents were good to us, even if they were a bit too strict for my wishes. As adults, they still remained good to all of us, and stood by us through any and all of our mistakes.

Bye Bye Mom and Dad

Mother Follow Up

I received a phone call from the President of the facility where Ma had recently been living. Paul and I had met him on the Sunday that Mother was found dead. He was polite and empathetic at that time. Today he impressed me even more.

He called to tell me that the Social Worker had been wrong, and that we did not need to pay for the month of December. But first he offered up sincere condolences, and then let me know that the whole staff had been meeting to try and figure out just what went wrong. I mentioned my concerns about having stairs open to clients, and a wooded area on the grounds that clients were able to access. This wooded area then led to a crevice where Mother was eventually found. I was very adamant about the fact that I wanted these issues addressed. He assured me that these issues were being considered.

I told him that the coroner's office suggested that I report the incident to the Department of Health. The President dude told me that they had self-reported. This made me feel better.

Then he let me know that the staff was having a difficult time with this whole incident. Mother was well liked - she was joyful and loved the staff. I did let him know that I was not holding my mother's death against anyone in particular, but I was angry with the situation in general. Again, he understood.

The cynic will say that he was covering his butt. I can be a cynic, but I can also be too trusting. My intuition tells me that he was sincere, and would accept blame when and if it came to that. I can admire a boss that will accept blame before he lets his employees get beat upon. Thank the gods that I have a cynical brother and sister to keep me in check! We are a great balance, the three of us.

Until later,
Ann and Dennis

Mobility

Dennis has been going to the Courage Center once again. He quit for a bit, simply because he hated Metro Mobility. Now that Raquel has her license once again, he tries to go at least twice a week.

Today Raquel told me he worked out really hard. He was on the reclining walker for 35 minutes and did his upper body work, too. He needs to keep up with this to keep his muscle atrophy at bay for as long as possible.

He has been getting muscle fatigue quite often lately. He also has been stiffening up more often. It is becoming more and more difficult to get him in and out of the car. We are starting the process of looking at accessible vans. Our lease is up this spring, so hopefully we can turn it in and purchase a used van that he can be wheeled in and out of easily.

His lift chair arrived on Sunday, allowing him to sit in the living room without his wheel chair. It keeps me from breaking my back when helping him up and out of a seat.

He is also looking at those scooters, but I am not encouraging this. I am so afraid that one he gets one of those, he will never see the necessity of walking again. But without his mobility, he will become unhappy. And we do not want an unhappy Dennis.

So we will continue to look for more ways to keep his life as normal as possible.

Until later,
Ann and Dennis

Funeral Day

Sleep was easier for both of us last night. The turkey might have helped. More likely, though, is that fact that we had fun with Jane, Ralph, Hamed and Ashley yesterday.

Hamed, Ashley and I shared stories with Jane about Mother's day at the karate tournament. We laughed about how mother complained to Ashley about how long she had been there, and was Hamed ever going to start sparing. Then, on way home, she told me how much fun she had at the tournament.

We talked about Mother switching from a Packer backer, to a Vikings fan. Or rather, that she really didn't care who won the game, as long as someone won.

We talked only about recent memories, and felt better about her dying while she was still happy and healthy.

Today is her funeral. In a few minutes, we will begin the drive to Eau Claire, perhaps for the last time in each of our lives. Then we will begin the process of acceptance.

Until later,
Ann and Dennis

Raquel

I was very wise on this Thanksgiving morning! I had Raquel come in and get Dennis ready, so that I could get dinner ready and the house picked up. It turned out to be a very good choice.

Neither Dennis or I got much sleep last night. As I said the other day, Dennis gets needy when I am taking care of something else, and I get overwhelmed. I wish I could be there for him, and him alone, 24/7, but it isn't in the cards. And for so many reasons.

I would kill him after about 2 weeks, is at the top of the list.
Under that heading comes financial needs.
Then there is the needing to be able to have a discussion with someone that I can understand.
Of course, our loving relationship suffering because our roles would become to different.

I could go on, but why?

Anyways, I am glad that Raquel could come in and get him showered, dressed and ready for the day. She also got his wheel chair sparkling for tomorrow and the big day ahead.

She will come in tomorrow, also, to get him showered and into his suit. This will give me the chance to be funeral ready before the 2 hour drive to Eau Claire.

Sometimes I feel so very wise.

Until later,
Ann and Dennis

Needy

Dennis gets so needy when I am involved in someone else's life - or death, in this case. He was extra needy when my dad died, when I was spending time cleaning out my parent's house, and now, once again.

I think it is because he wants to help, and he cannot. So, instead he wants more of my attention, and frankly, I don't have the energy left to feed his needs.

So he wakes me up in the middle of the night. I cannot understand him at night. He wants something, or wants to say something, but I can't give him what he wants because I don't know what he wants. So he sighs and moans, and I am wide awake.

And, now both of us are whining - he in bed and me right here. Sigh.....

Until later,
Ann and Dennis

Happy Thanksgiving, one and all.

Another Life Change

Was it really only six months ago that my father died?

...3 months ago that I sold my parents house and moved mother to an assisted living home near me?

...1 month ago that I defined, in my words, being old?

Today I must report that my mother has died.

I am happy that both of my parents died while they were still relatively happy and mobile. All of my grandparents suffered miserably before dying. They were able to end that particular cycle of events.

Still.....

Today I made Dennis promise that he would not die within the next 6 months. I am simply not ready for that.

Until later,
Ann and Dennis

ER, again...

Last night Dennis and I took another trip to the ER. I sent him by ambulance and followed in the car. When I arrived, and walked up to the window, the nurse handed me a visitor pass with the room number already written on it. She greeted me by name. This isn't a place where I would ever have expected to become well known. Sigh...

When we came home, we both laughed about wishing we could get frequent flyer miles.

I knew this new cath was going to be an on-going story.

Until later,
Ann and Dennis

Roles and Responsiblities

At work today we were discussing the age old problem of prepping, cooking and cleaning up after the holiday meals. Men, age and women all entered into the conversation. Who should prep? Clean the house? Cook the food? Serve the food? Clean up later and watch football?

Then I threw in the disability card. I swore that I would never throw in a card for anything. I wish I could take it back. But it is out there and there is little I can do about it now. I played the one-up-bull.

I have always been a bit militant about the "duties" of women and men. When I was young, there were definite roles, which was normal for my generation. I never liked these roles, mostly because I hated putting my hands in dirty dishwater. Much to my mother's chagrin, I began to make a fuss as the men parted to the TV area and the women were dismissed to the kitchen. I wasn't popular at family gatherings for a while.

Dennis was a sweet change into my life. He cooked and he did dishes. We found a great balance with one of doing job or the other, with very little quibbling.

But now, at family gatherings....

Dennis can't do much. Mother forgets, and doesn't do much. For some reason, my nephew and his girlfriend just don't do anything. Jane and Ralph aren't here often. Paul is never here; at least he does not add to the load. But for the first time in my life I am okay with most of this. I don't care about the disabilities standing in the way of family gatherings right now.

Dennis and Mother can't help their situations. Hamed and Ashely will eventually be in charge of hosting events, and the payback will be their due. Jane and Ralph always do their share when they are around. And roles and boundaries just are not as important as they were at other times in my life.

Maybe I just grew up?

Until later,
Ann and Dennis

Nuerological Disorder Family Member #3

Friday I took Shiva, the cat, to the vet for her check-up and shots. Whenever I see her around other cats, I am shocked by her size. She is about 1 1/2 years old, and still weighs under 7 pounds. The doctor said she is the perfect weight for her size.

But, the doctor also confirmed something that I had been thinking for a very long time.

She has a neurological disorder. Her brain is only half developed. In other words, she is a half-wit.

This explains why Shiva cannot leap, or misses when she attempts a leap. It also explains why she simply tips over at times just walking along. She still is cat like and wants to perch, but she needs help getting up on the back of chairs or sitting on the window sill.

The staff showed me one of the clinic cats with the same disorder. She fell over, too, had a hard time playing with toys and looked befuddled.

I am simply destined to be surrounded by special needs living things. Oh well, at least they are all of sweet dispositions.

Until later,
Ann and Dennis

Telephones

When I was in my twenties, I became involved with a guy who turned out to be a bum. He didn't pay bills, show up for work and had two kids who were in trouble all of the time. The telephone rang all the time with complaints about one of the three of them. This was long before caller ID and I dreaded hearing the phone ring.

The relationship ran it's course, but the dread of the phone calls did not. I had become conditioned to break out in a sweat whenever the phone began to ring. I spent the better part of my adult life running away from telephone.

By the time Dennis and I found each other, I had shaken off the fear of phone calls. But in the last two years, the old feelings have begun to return.

A 6:00 am phone ringing means a PCA isn't going to show up for work. This, in turn, means that I must scramble to find coverage for Dennis, or take a day off of work.

Any phone call between 8:00 and 4:00 could be either about Mother or Dennis - a fall, a tear in the skin (really, I have had a call about this), someone is going to the hospital or worse. Often, I get phone calls from Assisted Living or the Transitional Care Unit, telling me that Mother is in trouble (she and a friend were leaving the grounds to walk)or she is missing a meal or some other silly thing. Then, the bill comes at the end of the month and there is a charge for these calls! I didn't want the call in the first place, and now you are going to charge me for it?

At least these days we have caller ID and I know who is calling, if not why they are calling.

Until later,
Ann and Dennis

Something New?

Oy! A full moon and Halloween candy makes for a very, very long week in schools. I am very happy this week has been checked off and completed.

I don't think I can blame candy or a full moon for Dennis' latest trials and tribulations, however.

He has been so much better, since our brief time with a family therapist (we were deemed in darned good shape considering our situation) about waking me up in the middle of the night. However, the last few nights he has yelled out "seven" until I was awake enough to tend to his needs.

Seven is the level of pain he is experiencing. In the ER and Urgent Care centers, they have a rating scale, 1 to 10, on pain. Dennis, not being a stoic Scandinavian, heads directly to the high numbers. We have, however, agreed that a 7 is "wake Ann," worthy.

He has been having issues with his cath. He feels it is clogged, even though there is some urine in the bag. I have been able, via a syringe, been able to pull out quite a bit of urine whenever he announces to me, "Seven."

Raquel called the urologist, and they figured he had a bladder infection. They prescribed another antibiotic for him. I am doubting that this is the real problem. Okay, I am not a doctor, nor do I play one on TV, but I know that something is amiss.

Unfortunately, I fear that more is to come.

Until tomorrow,
Ann and Dennis

Blah, blah, blah

When, and if, I look back on these blog entries, I wonder how many I will find to be immature, or whiney, or self-destructive, etc. Perhaps I should add a vote at the end of each post for feedback. Perhaps I do not really want to know.

It's been a tough week at work. A full moon to start off the week, coupled with too much sugar in a kids post-Halloween diet, are automatic warnings to self-destructive behavior. I have come home pooped and running on auto-pilot all week. It's typical of this week of the year. If forced, I could find the hard data to prove all of this, but I would prefer a simple act of trusting my word.

Whatever does any of this have to do with Dennis' MSA or my being a caregiver?

I am grateful that we have found the right cadre of carers to work with Dennis. I know it will always be fluid, but I have accepted that. For today we have the right group.

I am grateful that I know my job, enjoy my job, and have found a balance with my job and my life.

I received a call from the TCU where Mother is right now, and she should be able to return to her apartment sometime next week.

The country social worker is ready to help us apply for Medical Assistance, so that we can have a bit more time for PCA help for Dennis

I know that the two of us are bright enough, resilient enough, tough enough, strong enough and willing to let all that is hurled at us to be resolved. And when we do not have the knowledge to move forward, we do know how to find the answers.

I am grateful that both of us have learned how to ask for help, receive help and allow help into our lives. Thank you to all of us that have heard and responded to our requests for help.

Full Moons

When I drove my mother home on Sunday, I looked at the sky with trepidation - the moon was full. I knew that Monday the kids would be full of Halloween sugar and out of sync with life because the moon was in a funky state.

This was one area where my father and I always disagreed. He was unable to accept changes that were not scientifically based. I, on the other hand, embraced new age thinking' at least that stuff that I had been able to view first hand.

I, like dad, used data to determine the past, future and present. The data we collected differed, however. I have data to show that children (at the very least) are behaviorally challenged by a full moon. I have a belief, without personally collected data, that sugar alters behavior. Thus, in my experience and data based thinking, Halloween and a full moon do not mix well.

I do not collect specific data anymore, but this week proved both of my long-term beliefs, based on data, to be true. At least about children, in school settings.

If I had the energy and someone to financially back me, I believe I could show that a full moon, and a seasonal time change, also affect many of us in an adverse manner. Alas, I have neither the energy or the money. So, no one, but those of us that are affected by such small matters, have much say in the matter.

Perhaps we should not have much say. Perhaps there is a reasonable big picture that some of us are incapable of understanding, or have simply not been shown. Perhaps I am simply whining, once again, about something that affects no one but myself.

In the long run, all I really know, and am able to back up, with data, is that candy giving holidays should never coincide with a full moon. And, perhaps, that is enough.

Sundowners

Sundowners disease.

Cyndi, my non-SIL in California, first mentioned this to me last spring when we were trying to figure out what to do with Mother for the rest of her life. She did quite a bit of online research, and it made sense.

Then, as I was reading the thoughts and writings of other boomers, I heard other people mention this new phenomenon. It seems people with Alzheimer's Disease get more confused and frustrated once the sun sets.

Today, I fully witnessed this phenomenon.

We had Hamed and Ashely over for their birthdays. We broiled steaks, had wine (Ashely turned 21!) and then watched football. It was the Vikings (Dennis's and Hamed's team favorite team) vs the Packers (Ma's team), but they didn't play until 3:15. Dennis had playfully made Ma put on a Vikings jersey and he wore his very own. Everyone, including Ashley and me (we both dislike football), were enjoying the game and sharing stories.

About 5:00, the sun began to set. First Dennis said he needed to lay down. Once I had him in bed, I asked Hamed if he would drive Mother back to JH. Then she began to fidget. "You can take me home whenever...", "Is the game almost over? I want to see the end, but, does Hamed know where I live?" "Is it dinner time? Did I eat dinner?" "Do they need to walk me up? Do I need to check in?"

Finally, I admitted defeat. I needed to take Mother back to her home. As soon as I said, "Let's go, Mom, I will drive you home," she settled down and we left immediately. She wanted to get into her pajamas immediately and get into bed when we entered her room.

On the drive back I was wondering if light therapy would help those with neurological disorders. I must remember to look that up.

Until later,
Ann and Dennis

Birthdays

It's the first of November, and birthday party time in the Osterhus household. Well, it used to be a big event. My brother, sister and father were all born in November, their birthdays all within one weeks time. Then Hamed, the only kid this generation produced, was born two days before Halloween. Adding to the mix is Ashley, Hamed's girlfriend, with a November birthday, also. We had multiple parties when Hamed was a a child and then moved to one big birthday when he was old enough to share.

First Paul dropped out of the party scene, moving to California many years ago. Then Jane moved to London and this spring Dad died.

Today it will be just Hamed and Ashley celebrating with Dennis, Mother and me providing the entertainment and food. Actually the Vikings and the Packers will provide the entertainment and I will provide the food.

Happy birthday to anyone celebrating this month!

Until tomorrow,
Ann and Dennis

Life

Last week I was at my doctors for my yearly appointment. We were talking about memory issues and it seems I have no problem. I guess if you forget daily chores, mindless activities, you are okay. It's when you forget the big stuff - like going to work - that you need to start worrying.

Have you ever felt like you were simply existing? Moving forward? Maintaining? I wish I could really put this into words, but these days I am simply happy if I accomplish whatever it is I need to do on any given day.

T0day, I was able to let 4 girls in 4th grade know that at "our school" we would not accept mean and bullying behavior.I gathered packing boxes for them and assured them that any continued misbehavior would result in moving to another school. I also put a 5 year old, with a vocabulary of a 40 year old, know that demeaning language and biting was simply out of line. Then I let another 4th grader know that if he did not do his homework each and every evening, I would put my foot down and move him to another school. Furthermore, I put a couple of teachers in place, helped make Hobboken Stew for a staff happiness fest (HA!). Then I met with a bus of hoodlums and put them in their place.

I feel good about today, and know that tomorrow may result in starting all over once again. I live day to day to day. Maybe this is the right way to live. I do not know. I only know that this is the way that life is leading me today.

I also know that life is fleeting and that we must live for today. So I shall. At least today - I will live for this one day.

Until later,
Ann and Dennis

ps, mother is back at TCU, Dennis is in a happy place, and we have found new PCAs to lighten our life. Next step is getting qualified for Medical Assistance....more to come

ER, again.

If I wasn't living this, I would be sure that I was a liar.

After over-sleeping because Dennis woke me up once again (for legit reasons, I guess), I was forced to rush around getting ready for work, and to meet a potentially new PCA. I got myself together just as she rang the bell. Whew! There was time to introduce her to Raquel, who had orders to show her all the icky stuff the job included, and then rush off to work.

Traffic was in my favor and I made it to work with minutes to spare. I logged on to the computer and gathered my papers together for a meeting. Then the phone rang. It was Jones Harrison and Mother was being transported to the hospital once again.

Didn't this just happen 10 days ago?

This time, I believe, Jones Harrison over reacted. They called what happened a "seizure". After 6 1/2 hours in ER, I finally found a neurologist who believed the same as I did. She probably fainted, because she is dehydrated and undernourished.

This being elderly shit sucks.

Until later,
Ann and Dennis

Old

Thursday, sweet Thursday. It's the new Friday. But, I am not going out and "chilaxin'" at a bar with wings and music. I am just happy that I only have two responsibilities for one extra day. Oops, I forgot me. I only have three responsibilities on Fridays, Saturdays and Sundays these days; mom, Dennis and me.

I am happy that I have 3 days to spread out my responsibilities instead of the traditional two weekend days. I am happy that the alarm can be set forward an extra hour. I am happy that Dennis and I have a few extra hours to spend together.

But it never feels enough. I have been in denial for quite a while now, that I am officially old. Somewhere, along the line, my parents became elderly and that made me, in turn, old. Dennis is old, beyond his years, and that makes me feel older, still.

There is buzz all around that 60 is the new 40, and 50 is the new thirty. Shit, that ain't true. Maybe if you go under the knife a few times each year, you could look a bit younger, but sooner or later you just look like an old person with tight skin. Or maybe if you keep a young attitude, you could feel younger, but your parents are still going to die and make you feel old.

When we were young, we were in weddings and partied with friends. Now, we attend funerals, and spend time in hospitals and nursing homes.

Still, I have 3 days off and I can only afford that because I am old.

Until later,
Ann and Dennis

Sleeping

Dennis slept at the hospital two nights ago for a sleep study. The doctor never called us about the results, so I expect that all is okay with him. I slept alone in the bed, and while I slept through the night in peace, I missed my Danielito next to me.

Last night, Dennis slept most of the night on the floor. I woke to hear him grunting, trying to pull himself up from a half in and half out of bed position. We finally just pulled him the rest of the way down, when it was apparent that between the two of us, we did not have the strength to pull him back up. Then he was fatigued, and couldn't get on all fours, so I just made him a bed on the floor. I did not sleep in peace, but I still missed him sleeping with me.

Next time I complain about him waking me up (and I will), would someone kindly remind me that I do miss him when he is not around? I most likely will say something slightly sarcastic back, but I will hear you.

Until later,
Ann and Dennis

A Sunday in the Day of Me

Believe me when I say I am not whining her or complaining in any way what-so-ever. What I am doing is putting down a very matter of fact recall of my day. Sunday, the day of rest, by the way.

I woke up at 7:30, after an undisturbed night sleep. Thank you, Dennis, for listening to Celeste, our new therapist, and following her instructions. Dennis was staring at me when I rolled over with, "I didn't wake you up!" Oh, if we all could have so much pride in our accomplishments.

At 7:45, I got up for a stop in the bathroom, put water on for coffee and headed back to the bedroom. I propped up Dennis, who decided he wanted to sit in his wheel chair. I helped him stand, sit and then pushed him in the dining area, where a chair was removed for him. Nope, he wanted to sit at the other end of the table. So I moved another chair and pushed him in to the new spot.

Then I toasted him an English muffin, buttered and jellied it up. I poured a bowl of applesauce with cinnamon, his fave today, and fetched his morning meds. These, I placed in yogurt and fed to him slowly. I opened up a coke, put in a straw, and handed him his left over blueberry muffin from Saturday morning at Perkins. I fetched him the newspaper, a drool rag and a blanket for his legs.

Kitty was going crazy with the rubbing of my legs by now, so I fed her and cleaned her box. Then I made my coffee with heated cream, Gharedelli chocolate and cinnamon. I now demanded my fifteen minutes of carefree life. I stared at the walls, listened to acoustical radio and flipped through the comic section of the paper.

Then it was shower time for Dennis. I got the shower ready, clothes ready, and wash cloths with poopy butt soap, face soap and body soap. I gathered the shampoos, cleaners and rinsing hose around him and helped him into the shower. First it was a butt up cleaning then sitting down in the chair for him to do most of it on his own.

I turned on the baby monitor, and went to wash my face, comb my hair and get dressed. As soon as Dennis was out, I needed to get to the hospital to pick up Ma. After a few minutes Dennis was finished and it was wipe down, change leg bags, pull on diapers and slippers, and today, a simple robe.

Two feedings later, I ran to pick up clothing for mother from JH, moved some essentials from one apartment to another, and then headed to pick her up. Thankfully, the paper work was ready, and it was only 30 minutes at the hospital before we were headed out.

Her new room was ready, sort of. There always seems to be problems with remote controls where ever we go, and Mother does not like to be without her TV. I finally found a room for her to watch the football game. I was pretty adamant about them finding a remote before she returned to her room for dinner.

Then it was grocery shopping and a trip to Walgreen's for essentials for Dennis. Then hauling everything upstairs, unpacking and putting it all away before giving Dennis one more feeding. Now cleaning the cupboards, putting away the grocery bags, and pouring myself a glass of wine - at last.

Yes, dinner is still ahead, but Dennis should be full from all the tube feedings, and frankly a glass of wine sounds better than finding the right sauce for chicken, cooking pasta, and then finding out Dennis does not want to eat it, anyway.

Until later,
Ann and Dennis

Mother in the Hospital

The health fairies must be very, very angry. I am not sure who did what to whom to piss them off so much, but they have rained down on this household way too much.

Mother is in the hospital with a fractured pelvic bone.

My mother is known for being the anti-grace queen. She can fall while standing still. It's true, I have seen this happen. She has always tripped over the tiniest thing on the ground. She is almost like the princess and the pea, but she is the princess and the dust fleck on the ground. Jane and I both call our cats Avey, because they fall so often. Avey is a family euphemism for anything ungraceful.

Anyway, she was at the Ordway on one of the assisted living outings. She fell when walking back to the bus. At least she heard the music first.

I have been to the hospital and ER way too much this past year. I want it to stop. Please, health fairies - we will all get our flu shots, and will wash our hands often. Just leave us in peace for a little while.

Until later,
Ann and Dennis

Dennis the Menace

It's 2:38 am on a Thursday morning. Why am I awake?

No, I did not wake up and suddenly need to go to the bathroom. No, although I often do wake myself up snoring, that is not the case either. It, of course, is Dennis.

So what did he do this time?

He has been worried lately, about everything. He is sure that his feeding tube is plugged. He is positive that Raquel and I are plotting against him. He thinks that his catheter isn't draining properly. He isn't eating. He isn't getting out of bed. He isn't having any fun.

And he wants to make sure that I am miserable, too.

We talked when I came home from work, and I thought we had moved ahead, a bit. But then he woke me, at 2ish, to check his catheter. I, very unhappily, crawled out of bed (we keep the temp at 62 degrees, so it is COLD) and put together a set up for unclogging the tube. I inserted water, and then pulled out nice, clean and unclogged urine. No blood, no clots, no nothing but urine. Now he feels better and I am sitting here stewing.

No, he really doesn't want me to be miserable. too. But he is very high maintenance - not a quality that I admire.

We will get through this period. We always do. In the meantime, I have my computer, a free blog site and you, my dear readers (who said that?) to listen to me.

Until later,
Ann and Dennis

Laws, Rules and Other Such Crap

We met with a county social worker today and I have so much to share. But, very little of it is good news, at least in our case.

If Dennis was still able to work, he would be eligible for lots of help. But he can't work, so he need not apply.

If Dennis was indigent, had never worked and was homeless, he would be eligible for help. But no, he had to be Mr. Responsible.

But, the social worker was good. She told us that all he needed to earn was $75/month, and it didn't have to be real work. We are both pretty honest people, though, and will look for a way for Dennis to get a paycheck each month while providing a genuine service.

The frustrating part is learning the rules of the game that we are playing. First you must know the right people so that those people can tell you the rules. Then you must find ways to work around those rules. Finally, if and when you have understood the rules, you must learn to accept that not all rules are really rules, but rather interpretations of rules.

I remember a sign I saw in Jamaica. "Marijuana is illegal. Cocaine is REALLY illegal!" You interpret anyway you wish.

Until later,
Ann and Dennis

PCA Woes

Shit, shit, shit.

Somewhere out in the universe, I sent off vibes saying I did not want to go to work! It's not true, it's not true. I do want to go to work. I do, I do, I do.

Dennis' PCA called in sick today. Leah, the newest one, is prone to panic attacks. She had a tough weekend, and an attack kicked in sometime early this am. Raquel was out partying all weekend, and just hit the bed. JoAnn is testing this week. Which leaves me, at home, for the 9th day in a row.

And Dennis has diarrhea. Just how could life get any better?

Shit, shit, shit.

Until later,
Ann and Dennis

The Walker

I have been planning on buying shoes for 3 weeks, but illness stood in the way of shoe happiness. Yesterday, Dennis and I ventured out to my favorite shoe store. We returned with 3 new pairs for me and a new TV for him. No, he did not buy the TV at the shoe store, but after finding the perfect black pair of heels, I just had to bring him to Best Buy.

Yes, shoes make me happy, but Dennis made me even happier yesterday, by using his walker.

There are a few reasons using the walker makes me smile. The first is purely selfish in nature. The walker weighs about 120 pounds less than the wheel chair. When he takes the wheel chair, I lift 300 pounds getting it in and out of the car, for each stop we make. If we make 3 stops, that adds up to 900 pounds, plus 300 pounds for the beginning and end of each trip out of the house. The walker, weighing in at 30 pounds, saves me 960 pounds of lifting! That is so close to 1/2 ton, that it makes me weary simply thinking about such weight.

The second reason is about Dennis, not me. It's simply good for him to walk as often as possible. When he takes his wheel chair, even when he uses it as a walker, he always can opt out of staying on his own two feet. When he walks, he feels more independent, he gets a good workout and he stretches out those leg muscles.

So, Saturday was a happy day for both of us. I found some great shoes, he bought a new TV for his games and we both came home feeling good about the day out on the town.

Until later,
Ann and Dennis

National Family Caregiver Association

ENCOURAGE ALL THE FAMILY CAREGIVERS YOU KNOW TO JOIN THE NFCA COMMUNITY OF CAREGIVERS. THERE IS NO COST! Just click here: http//www.thefamilycaregiver.org

I just wanted to pass this along to everyone.

ER Episode 4 (or is it 5?)

I woke up this morning fever free! 3 cheers!

The household did not hold out long, however, before sickness struck again. At midnight, Dennis woke me up and wanted me to check his catheter. He thought it might be clogged. Since the night bag was dry, it was obvious he was clogged. We had two choices - wait until morning or go to ER. Dennis did not want to do either choice and we started a game of one-upping each other with words and thoughts I don't want to admit to online. I will only say that it wasn't pretty and that I hope we did not wake up the neighbors.

He has a bladder infection, again. It's easily treatable. And we should have seen this coming quite a long time ago. There definitely were signs.

A couple of weeks ago, during his last bout of diarrhea, his urine was almost black one morning. It was better the next day, so we forgot about it. He has been lethargic lately. The weather has changed, and I have been so sick, that we ignored that, too.

Then there was the nasty clot in his night bag that Raquel found this morning. I thought I had pulled the whole clot out of the tube and we planned on calling the urologist during the day. Only problem is, each of us thought the other was going to make the call.

We need to become better at handling situations such as this. The mean talk is uncalled for no matter what is happening. We need to watch for signs and act on them right away. Neither one of us have ever been people that run to a doctor for this, that and the other, but perhaps that needs to change.

Tomorrow, when the dust has settled, the prescription has been filled, and we have both had our 8 hours, we can talk. That's one thing about us that is great. We can always talk it out. And for that, I am extremely grateful.

H1N1?

I haven't had the energy to write, or even think, for a week. I have been running a fever for 7 days. Sore throat, ear aches, cough and sneezing.

God bless Dennis' PCA's. They are taking good care of him while I have been isolating myself as much as possible. I do not want Dennis to get this - he would drive me crazy!

I did not pick up Mother last Sunday either, and haven't even had the energy to call her. Hopefully, I will be fever free by this Sunday.

Nothing more to add, just a quick note to say we are alive.

Until later,
Ann and Dennis

Changes, Care-giving and Other Such Stuff

It is Saturday morning shower time for Dennis. Once we get his poopy butt clean, he sits in an IKEA metal chair for the rest of his shower. At this stage of the shower, I get about fifteen minutes to myself.

We purchased a baby monitor a few months back, and it works like a dream. I no longer have to sit in the bathroom to watch for problems. Then we bought an extension shower head, so he can turn the water off and on by himself. These to simple solutions bring me 15 minutes of peace on Saturdays.

As a care-giver, I have learned to relish these moments of worry free times. Sure, I still need to be here, and yes, I must be attentive, but it still gives me a few minutes of hands off care-giving.

When I was a young teen, I hated baby sitting and decided never to have children. And here I sit enjoying the freedom that a baby monitor gives to me. When I was an older teen, my grandmother, Ho Ho, needed to have help when my grandfather went to work. I adored her, but really did not like looking after someone who needed help. When I first went to college, I wanted to become a nurse, but I found out. I did not really like sick people. Yet, here I am.

Life stands in the way of plans and contradicts our belief systems. I always knew I could never do what I am doing, today. Yet, I suppose I must have been wrong. What do I believe now? I am not sure, not quite yet, but I think that it is much different than what I have always known to be my own reality.

Until later,
Ann and Dennis

Falls

Dennis has fallen 3 times this week. The first time he was sitting on the toilet. The second time he was standing in his office, and yesterday he fell in the kitchen.

He has been more careful the past 2 years, and the falls have been few. Even so, obviously they have started to increase. This is not good news. But, it is still workable news.

We have had a toilet seat riser, since we moved last year. It worked for a while, but Dennis has been needing increased support while sitting on the toilet. He requires a steady seat, and a riser does not provide this. It doesn't help that we have hard landing in the bathroom with tiles. Carpeting is out of the question.

Today, we will be checking out other solutions to the toilet problem. I don't know if there are risers that are sturdier, or if we need a new, high rise toilet. Conversely, maybe we need to add some more bars around the toilet.

One problem with MSA, is that there are so many unknowns. I never, in my wildest dreams or nightmares, would have considered that a toilet design would be something that I would have need to think about, when we first embarked on this new journey. But it is, I guess.

Until later,
Ann and Dennis

Shit, I am Old

Just how old are you when you find yourself the official closer on your mother and father's 30 year home? Or, maybe better asked, when your partner falls down three times in one week?

There are significant events in your life that make you realize that you have aged. For some people, the 30th, 40th, 50th 0r 60th birthdays are milestones (I don't yet know beyond the 6th decade). For me, the years haven't meant as much as the events that have happened along the way.

In the past few years I have lost my waist line. This has been a huge reminder of my own age. OLD. Mary, of Peter, Paul and Mary, died two days ago at the age of 72. I thought about how young 72 is - another indication that I am rather old. I am OLD.

I need some time to accept this new thought in my head. What is the routine? Anger, denial then acceptance?

Okay, I am angry! I am old! Grrrrrr!!

Until later
Ann and Dennis

Alone

I am alone for the first time in over a month. Alone in my own home. No one asking me for anything, no keeping my eyes and ears open for cries for help. Just me. Well, kitty is here, but she is just sitting on the arm of my chair, not asking for anything from me.

I put Dennis on the Metro Mobility bus at 5:30 for his class at Pathways. I do not need to pick him up until 8:30. Three whole hours of aloneness.

I am not going to write anything else, right now. Instead I am going to sit back, stop thinking and enjoy the rest of my three hours in a mindless state.

Until later,
Ann and Dennis

Sunday Woes

Okay, I admit that this post is a complete whine. I am feeling sorry for myself in the biggest way. I also know that I will get over this latest gripe in my life and move on to better things. However, it is my prerogative to whine, and your choice to read or leave this behind.

It is football season. To many, this is a reason to celebrate. For me, it is what hell would look like if I believed in such a place. Ever since the Packers found Lombardi and then Brett Starr, I hated football. It was noisy, too competitive and it irritated the hell out of me. Then, moving to Minnesota during the heyday and the likes of the ladies man, Tommy Kramer, I really began to hate the game.

However, everyone around me seemed to love the game. I learned to deal with one Sunday game, and then the game expanded to Monday nights, then Thursday nights and then Sunday day and night. A girl, like me, can only tolerate so much.

So enter the era of Mother living in Minneapolis, and Dennis being a sports fan. Couple this with Sunday being the day I have selected to have Mother hang with us, and you may find one unhappy Ann for the next few months.

I need to find a way to trick them both into wanting to do anything other than watch football.

Today I read, cooked, cleaned up and started tomorrows dinner during the game. It still was only half time after all of that.

In the meantime, I moved mom and Dennis to and from the table, 3 times. I went for a walk at half time with Mother. I even tried watching the game for a while. But, all I was doing was going a bit nuttier than usual. Always, in the back ground, was this irritating noise, and two people cheering over young boys in peddle pushers throwing a ball around. A few years ago, I could have at least appreciated the beauty of the young boys, but now they simply look like the children with whom I work. Yuck.

I will need to figure out a new plan for next Sunday. Clearly, this one is not working. Wish me luck, please.

Until later
Ann and Dennis

Sold.

My parent's house was picked up by a couple seeking a good deal, and I was agreeable. They offered a lot less than we asked, but I knew we had asked too much. They agreed to a counter offer, and want to close quickly. They have cash and are excited to move. I will be happy to have this off of my plate.

Or will I?

My parents had this home built 30 years ago. None of us children have ever really lived there. Early on, my sister and I stayed for a few months at a time, but it has never been "our family home." We have had family Christmases, birthdays, anniversaries, and such at this home, but none of us have ever had a full time family experience in this house. It has always been our parent's home, not our home.

Still, there is something a bit bittersweet about this particular ending. I remember the house being built, in this new area of the town where we all grew up. I remember the cool bricks they picked out for the biggest fireplace that I had ever seen. My father even put in the first sun heated water system, an unheard of concept at the time. I was proud of my folks at the time. This was a new feeling for me, and the house still holds these memories.

I suppose this house represents my adult years, and all the changes that have occurred between the ages of 20 and 60 (or close to it). I am happy that someone wants to buy it and update it and make it their own; I don't hold "stuff" as mine. Yet, there is no longer a place for any of us in Eau Claire - the town I grew up in and the town that holds happy, as well as sad, memories.

And that is all I have to say for now.

Until later,
Ann and Dennis

It's Not Been a Good Weekend

This has not been a great Labor Day weekend. First, Dennis had a bed, bad case of the shits all weekend. Most of the weekend he sat on the pot, while I cleaned the bed, the carpet, the floor and his butt. We did manage to squeeze in a trip to the Minnesota Zoo with Mother and JoAnne. That was fun.

Last night he started screeching, hollering and screaming in his sleep. I tried covering his mouth, sitting him up, and giving him a second sleeping pill. No luck. I am sure the neighbors were not very thrilled, either.

I went off to work this morning, and had the usual crap at work. When I came home, I found Dennis lying on the floor, surrounded by a broken glass. I don't see it as often as I did a year or two ago; yet I could assess the situation quickly and calmly and act swiftly. I swept, moved him to his knees, got him in a chair and vacuumed the rest of the mess up. Within an hour, I had made him dinner (mashed potatoes and mechanical soft meat - we are off the feeding tube until the shits are gone) and into bed.

Me , I am worried about Dennis. Dennis is worried about both of us. We are trying to find money to help get him more PCA time, but in these economic times, it is difficult. As long as we have any money at all, we are so low on the priority list.

Dennis is going, once again, to his doctor - one that we both like. He is thinking about a colostomy bag. This is way beyond what I am ready to comprehend right now, but I am proud that Dennis is ready to discuss this next possible step.

Day 2

Today is going to be a repeat of yesterday. I am not going to share anymore on this topic right now. Have a great Labor Day Weekend.

Ann

Not a Pretty Story

Okay, this begins with a strong warning. This post has a very high gross-out factor.It should only be read by people who are struggling with issues of constipation, feeding tubes, loose stools and those who enjoy a dirty tale.

Yesterday was a double diaper day with an extra throwaway pad everywhere Dennis sat. He also spent a good portion of the day just sitting on the toilet. For those of you that have followed for quite some time, you know that Dennis has constipation problems. These problems are further exacerbated by some of the medications he takes. Recently, we found the right combination of stools softeners, yogurt and senna to gently attack the problems.

We forgot to factor in the feeding tube eating.

It seems, like everything else that Dennis takes, the formula he uses when he feeds causes either constipation or diarrhea. This time around it was the latter.

So, given that we have dealt with this many times, we know how to prevent a complete mess, most of the time. This time was the worst ever and our precautions against messiness were useless.

We began with double diapers. Then his usual pad, and a throw-away on top of that. We had the sheet, a pad, a mattress cover and under that yet another pad. Okay, the bed faired okay to midland, but my Danielito did not.

I woke up to a man with poop up and down his back, his legs, the bed and pillow. First came the horrendous smell, then the sound of swishing and the call of Dennis for help. The poor guy had been sleeping in his own feces all night. He must have been terribly uncomfortable. Thankfully, he doesn't have a great sense of smell, or he most likely would have been gagging and throwing up on top of everything.

Two hours later, he is cleaned up and sitting on the toilet. We were planning on going to the zoo today, but we both think it's best to stay away. We don't want any big, mean critters sniffing at him.

Until later,
Ann and Dennis

Doctors

Yesterday, I took Dennis to see his Parkinson's doctor. I don't particularly like her. She seems to have forgotten to develop people skills as part of her practice. I think she tries, but being a doctor of some prominence seems to be more important that being there for her patients. In reality, I am sure that this is not true, but this is how she comes off, to me.

Most of the doctors, nurses, and other health care professionals that we have met over the past 5 years have had a very positive impact on me. During our hospital and emergency room visits we have met many caring, selfless, interesting and dedicated staff. At the Mayo, we were impressed with how much time was spent listening to and talking with us by research doctors. The Courage Center welcomes the disabled with so much comfort, no one feels out of place. I could, and probably should, go on and on, but I believe that I have made my point.

There definitely people at the Struther's Clinic that we both do like. Joan, the social worker, and Jean, the Physicians Assistant are both easy to talk to and provide the information that we need. There are others, too, that we both like. Happily, we deal with the "others" much more often than his doctor.

I believe that it is fairly apparent that I value social intelligence more than other types of intelligence. Perhaps I should get over this prejudice of mine and accept her for her expertise. I will think about this.

Predictability

Dennis' MSA symptoms seem to have hit a plateau, for the moment. After Ireland, he was very tired, and then the surgeries set him back a bit. But, since his catheter fell out last month, he seems to be doing fairly well. At least nothing new has popped up for a while.

I have learned to enjoy these times. Some have been very brief, others quite a nice amount of time. I have stopped worrying about when it will end, and instead enjoy the time at the plateau.

I easily adapt to change, at least, for the most part. Actually, I thrive on change - if it isn't constant. Even so, the changes in Dennis aren't exactly celebratory in nature. So, instead, I celebrate the non-change times.

Right now, I know how the mornings will look. I understand and am able to deal with the best and worst case morning scenarios. I know how the day may go, whether he is with me or with one of his PCAs. We may not lead the most exciting life, on a day to day basis, but we still have our home, travel, friendship and a complete and total love for each other. So, predictability, at least in this case, is wonderful.

And predictability is what I am celebrating today.

Until tomorrow,
Ann and Dennis

Multiple System Atrophy Stinks

" Ur ee." " Ur ee." " Ur ee, ur ee, ur ee." I am trying to pretend that I do not hear Dennis, once again, wake me at 3 am to turn him over.

" Ur ee, ur ee, ur ee, ur ee!"

I feel bad for him, but I cannot tell you how much I hate being woken up in the middle of the night. I roll over and then I feel guilty because I am able to roll over. So I get out of bed and roll him over from his left side to his right side. This time I am able to go back to sleep with ease.

A while back, I received an email from Angi, whose mother has MSA. She had recently moved her mother into assisted living because she could no longer care for herself. But, her mother was getting into trouble because she called for help so often.

I understand both sides. Dennis does need help with quite a few movements that most of us take for granted. On the other hand, I do tire of hearing, " Aaaaaaaaaannnnn," 30 times a day.

I suppose all diseases are unfair.

I hate what Alzheimer's is doing to my mother. She gets argumentative and frustrated. She feels that people she meets think she is stupid. She can't remember how to change stations on the TV using a remote. This is unfair to a woman who is extremely bright and articulate.

Even so, Dennis's disease seems particularly unfair. In four short years, he has gone from playing tennis weekly to not being able to walk without a walker and a personal aid. Four years ago, we would share nightly stories and now his speech has been reduced to vowels and some hard consonants.

I could go on, but why? I think I will close for now and celebrate all that we still have, together.

Until later,
Ann and Dennis

A Balancing Act

I am trying to figure out how to handle being a care-giver to two people. I am not my mother's official or primary care-giver, but she does depend on me for quite a bit, and these needs will only grow as time goes by. (I hear a tune in my ear...). We pay for Dennis to have a PCA while I am at work, but I am always his primary. I might as well admit that, at work, I am also more or less a care-giver. I help adults. parents and children figure out how to play the game of school. Well, maybe that's more a problem solving job, but some of the individuals really need lots of attention.

For a change, I am not complaining. I am trying to figure out how to find real balance in my life without turning into a drunk or a bitch. Or, for that matter, both.

Today, at work, I presented the new plan for a positive school climate. Translate positive school climate to mean poor behavior, and some teachers get their dander up. It's a sore topic, no matter how a person approaches it. My boss and I found a fun way to approach the topic, and, at least for today, it worked.

Then I came home. A message from Dennis' PCA, a message from Jones-Harrison, mom's new home, and a message from the Air Force, mom's insurance provider. There is always more work.

I know I am only working 4 days a week this year. But we haven't decided if this means more work for me, or if we will pay for someone to come in for Dennis on my day off. My boss, also, hasn't figured out that I am unavailable on Fridays - she has staff meetings and training she wants me to attend on those days.

I also am better than most at finding ways to take care of myself. I am basically a selfish person, so I am skilled at putting myself at the forefront. But this is all so new to me. I will figure it out, I always do, but if you have any good advice, I am listening.

Until later,
Ann and Dennis

Another Emergency Room Visit

In my last post, I mentioned that I had lost Dennis' sleeping pills. Well, as it turns out, it was a good thing they were misplaced that night. (Yes, they have been found). We ended up calling 911 and sending him off to emergency because his catheter had fallen out. After 6 hours, we were back home, sleeping, but not until I had learned a few new lessons.

1. Don't cut the stitch, even if it is tearing the skin around the insertion site. I did this a few days ago, and the added protection of the stitch was gone when the balloon failed.
2. Balloon's fail. When they fail, they look the same as a shriveled penis; nothing like the blown up version.
3. Pay your insurance premium, no matter how over priced it may be. I have been complaining about how much we are paying, since COBRA ran out and Medicare isn't available, yet. But, in one short night, we covered the monthly payment of the premium.
4. Not all irritating occurrences happen during a full moon.

All was well after the change of the catheter. Actually, Dennis seems to be feeling better than he has in a while. Maybe it was a bad insert. Maybe it was simply, that Dennis wanted to see a really HOT doc (and, oh, she was hot!), instead of the milquetoast that didn't seem to care after the surgery. Or maybe, it was just a sign that missing a doctor prescribed drug isn't always a bad thing.

Too Many Prescriptions

Lately I have been misplacing things and forgetting way too much. Yes, part of it is age, thank you very much, but I also want to blame some of this on how much I have on my mind. I seem to be in a constant state of minor confusion.

This weekend, I picked up some prescriptions for me, for Mother and for Dennis. As usual I had trouble getting Dennis' filled, and this time mom's were a problem too. Seems the Air Force couldn't find my dad, and they didn't want to cover the scripts. But eventually all of the drugs were ready for pick up. Three for me, three for Dennis and two for mom. I delivered my mother's to her and brought the rest home.

I remember separating them, and putting Dennis' on one chair, and my own on another. I put mine in my drawer and brought Dennis' into his bathroom. The next day, however, one of Dennis was missing. Shit. It was the class 3 narcotic that he uses for a sleeping pill.

I have searched in every drawer, tossed the furniture and the bed, and looked through my purse at least a dozen times. They are no where to be found. I finally had to dial the phone and plead stupidity. I imagine they will get refilled sooner or later, but I can rest assured that the insurance company, the pharmacist and the doctor will be on the lookout for future drug issues.

And I was really looking forward to a full night of sleep!

Until later,
Ann and Dennis

Moving Out

This has been, without any doubt, one of the most tiring weeks of my life. I am grateful that I had a good friend, JoAnn by my side every day of my mother's house clean up and thrift sale readiness. I am also happy that Jane could join us for 2 of those 3 days, and worked hard to get the job done on time. In addition, my uncle joined us to haul furniture, wood and garbage and lots of moral support. Then Celina and Joe, the young students who helped us in exchange for some furniture for their home, worked hard to get the house 'sale' ready.

A few neighbors and old friends also stopped by to wish us all well. For some of my parent's friends, they have been together since before any children were born. For others, newer friends, but just as loyal and caring. Tragedies really do bring out the best in some people. In others, it forces them to retreat and hide. In many, it just highlights the natural goodness that some people are gifted with.

Tubby, my uncle and Kathy, my aunt, shared with me at the end of the day, a successful estate sale. They were proud to tell me the ex-teachers and students that stopped by and named many friends that stopped in just to see the house. I imagine it was just a last goodbye, even no one they wished to say the words to, were actually around.

Mother, on the other hand, seems to be settling in well. She went on 2 field trips this weekend. One, she can't remember enough to tell me and the other was to Stillwater for a lunch. I encouraged her to go to a work out, and she stayed or News and Talk. She seems to be getting comfortable in her new setting.

Until tomorrow
Ann and Dennis

Mother is feeling fairly settled into her new apartment. She didn't remember that she had breakfast items in her room, so yesterday she went without her cereal. But she has figured out the television (I hope) and knows what time her other meals are scheduled. Today we are going out to lunch with Jane, Hamed and Ashley.

The lunch was suppose to be a barbeque at our condo. But Dennis is not feeling well. It's not like him to ask that people do not come over, but he can't even get out of bed. He was willing, however, to sleep for two hours so I could go and meet the family for lunch.

Sleeping

I am a gifted sleeper. Really. I have always had a talent for sleeping soundly and through the night. My sister and mother struggle with sleeping. Not me. I am the one in the family who really believes in the value of sleep. When I first met Dennis, he teased me about my sleeping. He had never known anyone who lived by the eight hour rule. Even when I needed to get up at 5 am for my job, I never went without my full eight.

So, what am I doing up at 3 in the morning, once again?

Yes, it has been a very strange and difficult year. Or, perhaps, even year and a half. But, until this spring, I had still been able to sleep. And, yes, Dennis is having those prairie dog dreams, again. But, even those wouldn't deter the real Ann from her solid eight.

I was laying in bed, just an hour ago, pondering all of this. I thought, perhaps I just need to get back to work. A schedule does wonders for a sleep pattern. Well, I return to work tomorrow. Just a dabble at work - 4 hours and then another week off. But, still, knowing I must be up and in the right frame of mind, does not keep me asleep. And, last year, I was not sleeping well, even when working. So, this theory is not working for me.

I am not happy when I cannot blame someone or something, for my problems. It just cannot be something that I am doing. It has to be Dennis, or work, or family, or just the luck of the draw. But, not matter what, it cannot be me.

Yet, this time, maybe it is my own problem. Just maybe.

Until later,
Ann (and Dennis, the sleeping half of this story)

A Small Whine

Last Wednesday, Dennis took a course called Choices, at Pathways. Tonight he returned for his second session.

He was supposed to get Metro Mobility to take him to and from the class. He hates the inconvenience of MM and forgot to schedule the ride until it was too late to find a good ride. Oh, I believe that. So, even though I had just spent another day driving the 200 mile round trip to Eau Claire, I took him there and in an hour, I will pick him back up.

We have discussed this ride thing often. His complaint is that Metro takes so long. Sometimes he has to wait while others are picked up or dropped off. Some days they don't have an appropriate time, and he arrives early or late. And he has to pay for the ride, and spending money on something that doesn't bring about immediate satisfaction is a sore spot with Dennis.

What he doesn't understand is when he inconveniences me when I need to take him to someplace. I have to spend 3 hours doing nothing, or find something to do. It wouldn't be so bad if he checked with me first, so I could make some plans. I could use the time to meet a friend. I could, now that Mother lives close, visit Jones-Harrison to see her. I could shop, or take a walk, or simply relax. But, when he does this, he just springs it on me at the last minute.

That's my complaint for the day. Other than this, he is perfect.

Until later,
Ann and Dennis

Middle of the Night Wake-Ups

After Dennis had woken me up for the third time last night, I swore at him and moved myself to the couch. I spent the next hour trying to relax, get that Del Amitri song out of my head and back to sleep. I found a few hours of good sleep. At least when I woke at 7 am, I felt fairly rested.

The first time he woke me up was to turn him. I try hard to be patient with the turning wake- ups. He is in bed quite a few hours at a stretch, gets tired and his joints get sore. He can't turn himself without help. Most times this turn is easy, and I can get back to sleep quickly. This time it was back to dreaming in minutes.

The next time he woke me up was because his arm was numb. What am I supposed to do about an arm that is asleep?

As I am relating one little night episode with you, you need to keep a few things in mind.

One, this happens almost nightly. It happens more often after a big change. Dennis had two big changes last month - the catheter and the feeding tube.

Two, Dennis struggles with pronouncing consonants, even when he is wide awake and at his optimum strength. I have learned to understand " ur ee" (turn me) and "uh in ons" ( covingtons - Dennis' word for covers), two of his most common night time requests. When he throws a new one out, I have to really focus to figure it out. By the time I had figured out, " i ar is um", I was wide awake and frustrated.

Three, I never know when he might really need my help. He has had a few falls out of bed, infections, pneumonia, and other large and small emergencies. The problem is he is not very good about differentiating between an emergency and simply wanting attention.

Four, Dennis talks in his sleep. Loudly. This morning, according to Dennis, the third time he woke me, he was dreaming and talking to me. It seems he thought I had a laptop computer in bed and was looking for a new TV for Mother. Since we actually are looking for a new TV, and have been looking on the computer, this sounds plausible. But, his eyes were wide open, he was very insistent, and I was trying hard to understand him.

I decided to forgive him. He said he will try hard not to wake me up for every single thing on his mind. Perhaps I should give him two sleeping pills tonight.

Until later,
Ann and Dennis

Stomach Tube (G Tube) Blockage

I spent most of the day with my mother today. I left the house at 8:30 and headed for Eau Claire. The plan was to pick out a few more items for moving, a last visit with her doctor, before heading back to Minneapolis with Mother in tow. She is going to see her new apartment and have an assessment with a nurse tomorrow. Then Jane will drive her back home.

It was a long day. A 100 mile drive, twice. A visit to the doctor, who spends a whole lot of time with each patient. Mother and Father both love(d) him, but he is always behind on his appointments. Then, we packed for the night, but mom kept forgetting something. Anyhoo, it ended up being a long day.

When we returned to our condo, Dennis was due for a feeding. Damn, his tube was blocked. I reread the information given to us and tried to empty his stomach contents with suction. Nothing. I tried putting water into the stomach, with no success. I tried a new suction tube. I tried hot water. Nothing.

I called the hospital. I could not find the direct number and the receptionist, although very pleasant, couldn't figure out what I needed either. Eventually, I was hooked up with a guy that understood what I wanted. While he transferred me, he told me that inserting Coke into his tube might loosen the blockage. As my sister Jane said, "that says alot about what we are putting into our bodies."

I left a message and received a call back a short time later. Pump, back and forth, warm water into his tube. Much like rocking a car out of snow. Slowly, in and out, back and forth.

Thankfully, this worked. Dennis is still officially without insurance. Yes, he will be covered by my insurance, but the paper work is not processed, yet. It's best not to take him to a doctor until the official cards have arrived. I really do not want to face one more insurance fiasco.

Until later,
Ann and Dennis

Constipation, Again

When we were in Ireland, we finally found a solution to Dennis' never ending constipation. I promise not to go into another icky poop story, but I thought, for someone, this information might be helpful.

A quick background. Most of Dennis' meds have constipation listed as a side effect. In addition to that, he has always had some trouble with bowel movements. Constipation is also one of the symptoms of MSA. It was bound to happen, in a big way, at some point in his MSA journey.

First we tried Mirlax. It worked for a while, but after a while, it quit helping. Then he took the 14 day Activia challenge. Yes, it helped loosen up the day to day garbage, but he was still impacted. Then we added colase (a stool softner) twice a day. Finally the doctor suggested senna. Of course, in addition we have tried enemas, but, unfortunately, those muscles don't contract well, anymore and he couldn't hold it inside.

In Ireland, a pharmacist gave us magnesium citrate. He explained to us it is what surgeons use when they really want to clean someone out. He told us that Dennis would have to take one bottle in the afternoon and one before bed. So we did. And it worked!

By this time we were using 2 sennas, a colase and a Mirlax in the morning, and senna and colase in the evening. But, no matter how cleaned out he was, he started the constipation cycle one more time. So I bought more Magnesium citrate. But, this time, I just gave him a half a bottle. And that worked.

Now we are down to 1/3 of a bottle after 4 days. It seems to be effective and efficient. So, if you are in dire straights yourself, one day, try it. You won't like the taste, but you may like the results.

Until later,
Ann and Dennis

MSA - Another Lesson

In the last post, I talked about symptoms of MSA. For the fun of it, I found a list of typical symptoms and put in bold the ones that Dennis is currently displaying.

Symptoms

MSA damages the nervous system, which can cause the following symptoms:

• Changes in facial expression
  • "Mask" appearance to face
  • May be unable to close mouth
  • Reduced ability to show facial expressions
  • Staring
• Difficulty chewing or swallowing (occasionally)
• Disrupted sleep patterns (especially during rapid eye movement (REM) sleep late at night)
• Dizziness or fainting when standing up or after standing still
• Frequent falls
• Impotence
  
• Loss of control over bowels or bladder
• Loss of fine motor skills
• Difficulty Eating
• Difficulty with any activity that requires small movements
• Writing that is small and hard to read
• Loss of sweating in any part of the body
• Mild decline in mental function (may occur)
• Loss of Balance
• Shuffling
• Gait Changes
• Muscle aches and pains (myalgia)
• Difficulty bending arms or legs
• Nausea and problems with digestion
• Posture difficulties: may be unstable, stooped, or slumped over
• Slow movements
  • Difficulty beginning to walk or starting any voluntary movement
  • Freezing of movement when the movement is stopped, unable to start moving again
  • Small steps followed by the need to run to keep balance
• Tremors
• May become severe enough to interfere with activities
• May be worse when tired, excited, or stressed
• May occur at rest or at any time
• May occur with any action, such as holding a cup or other eating utensils
• Finger-thumb rubbing (pill rolling tremor)
• Vision changes, decreased or blurred vision
  
• Voice and speech changes
• Difficulty talking
• Monotone
• Slow speaking
• Voice is low volume

Quite a list, isn't it?

Until later,

Ann and Dennis

MSA - A Lesson

I haven't done any information sharing in my blog lately. So today will be a lesson in MSA/Shy-Drager.

When Dennis was first diagnosed with Shy-Drager, he was recruited by Mayo Clinic, in Rochester for a study. After the tests were completed, the doctors concluded that Dennis did not have MSA/Shy-Drager and encouraged us to see another neurologist, a movement disorder specialist. This neurologist said that Dennis did indeed have MSA, but instead MSA - P. Here is a brief description of the differences between the two as well as a 3rd type of MSA.

When autonomic failure predominates, MSA is sometimes termed Shy-Drager syndrome. When extrapyramidal features predominate, the term striatonigral degeneration, parkinsonian variant, or MSA-P is sometimes used. When cerebellar features predominate, MSA is sometimes termed sporadic olivopontocerebellar atrophy or MSA-C.

In plain English, this means that MSA has 3 different forms, each with a different group of symptoms predominating. Dennis has the type that looks like Parkinson's. Most MSA patients have the type where the autonomic systems deteriorate first. (Autonomic systems are those that your brain automatically controls - blood pressure changes, sweating, etc). The last type is identified by a gross lack of coordination.

The diagnosis of MSA, MSA - P, or MSA - C is given when the main symptom plus at least one other symptom is apparent in a patient. In MSA - P, Dennis' type, the main symptom is gait disorder. He has that plus 4 out of 5 of the other symptoms. The only symptom he does not display on a regular basis is tremors. In addition, he has one or two symptoms of each of the other types of MSA.

If you, or someone you give care to, has MSA, I would be curious what type of MSA you believe is the correct diagnosis.

Until later,
Ann and Dennis

Sleep, Interrupted

It was a long day, today. Dennis wanted to get out of bed at 6 am and no matter how much I begged, there was not going to be any relenting. He had been in bed for 12 hours and he had a sore back. By the time I had gotten him up, dressed, changed and fed, I was wide awake, too. So I picked up the house and shot off a few emails regarding the sale of Mother's house.Then it was off for a hair cut for me, stitches replaced for Dennis, a stop at BlockBusters for a few Blueray disks (fancy ass DVDs) and a unplanned pizza pickup at the best pizza shop in Minneapolis.

By the time we returned home, 4 pm, Dennis was exhausted again. We managed to get in one tube feeding, one slice of pizza each and one movie, before Dennis went back to bed. Well, he had been up for 14 hours, and that is a long day for him.

I gave him two sleeping pills (it's within the prescribed amount) hoping he would sleep a little later for a Saturday morning sleep in late. These pills not only help him sleep longer, but also quieter. The muscle relaxers in the pills also keep him from slugging me in the middle of the night. They often help with his vivid dreams and wild screams. Not always, but most of the time.

All was well when I went to bed a few hours later. He was sound asleep and quiet. I drifted off into my own dream land and hoped for the best.

3 am. The usual time for sleep, interrupted, but not the usual suspect. One of those damn smoke detectors was beeping. I rolled over, trying to ignore it. Nope, that wasn't going to work. I finally got up, pulled a chair under the contraption right outside our bedroom door, and reached. Damn high ceilings, I couldn't reach. I went to the pantry, where Dennis had put a pole that I cursed every time I opened the pantry, and tried to reach it once again. Success! I had disarmed the detector!

By this time, Stinker, (Shiva, the kitty) was following me around and wanted up, on the bed. Actually, she wanted to lay on my belly and allow me to rub her face for a while. This was cool with me. I needed to unwind after my trials with the alarm. And just as I had started to forget reality, the beeping started again.

Who in the world, invented such a contraption? An alarm is suppose to give warning when it is necessary. Crying wolf is contradictory to what an alarm is meant to do.

I tried, once again to ignore it. I counted the seconds between the beeps. Knowing when the next beep is coming is easier for me than waiting for the next beep. Exactly 15 seconds between beeps. 4 beeps a minute. 240 beeps an hour. I wanted to sleep for at least 3 more hours, which meant I needed to tolerate over 700 more beeps. Shit. I couldn't do it.

I got up, again. I pulled out the fold up stool. Wisely, I put on a robe. Not only do we have high ceilings, but also too many windows for a late night naked scenario on a stool. I found the battery cover and opened it up. Damn. A 9 volt battery.

Who, in this world, keeps a stock of 9 volt batteries around? Not us, it appears.

It's times like these that I miss my old Dennis the most. Oh, I have lived alone as many years as I have lived with someone else. I know how to take care of myself. But, when you live with someone, you don't always want to take care of everything. Okay, let the self-pity go.

The upshot is, by now it is after 4 am, and here I sit. Counting the damn seconds between beeps. And, as it should be, Dennis has started making noises and talking in his sleep. The pills have worn off and my REM sleep is gone until at least tomorrow night. At least I got an entry written for today.

Until later,
Ann and Dennis

A Mother Day

Today was a day with Mother. This means a 2 hour drive, a visit with repetitive conversations, a confused woman, and a woman who really, really needs to work hard on her patience. Today we were both able to laugh and hide our frustrations.

Mom is moving up to Minneapolis in two weeks to move into an assisted living apartment very near me. She wants to, which is a blessing, but she is overwhelmed. This is understandable. I have tried to take away as much of the decision making as possible, by choosing her apartment and setting up the details. She, however, was the one to make the final decision about changing the city she lives in for the rest of her life.

Today, I went to take care of some business, but also help her decide on what she would take. I told her she had room for 2 chairs and a table, and then asked which she would like to take. She couldn't decide. I told her she had room for art work, and should take 2 or 3 paintings. She told me to pick them out. Thankfully, I knew she liked the Cassatt and then she picked out a Picasso (that surprised me!).

I know this is hard. I know she really doesn't care what she is surrounded with in her new home. I really don't think she cares about much of anything, anymore. I think moving her into her own apartment with people her own age will be good for her. She is already talking about how she will go out of her way to meet other people. She was excited about "movie night" and thought she would like to take in some movies. Her attitude is good.

This post was a ramble, I know.

Until later,
Ann and Dennis