New PCA

We decided to hire someone to come in for Saturday mornings to help out with Dennis. Since I am now retired, in many ways these seems a bit indulgent.

There are, however, several reasons that make sense for having someone come in on one weekend morning.

Dennis' hours have been increased from 8 hours a day to 12 hours a day. In this economy, people need to earn any money they can. I felt it was more important to give someone else a few hours than get paid myself. We hired a 20-something gal named Natalie who works full time, but is getting married soon. Her boyfriend is working an extra job and she wanted to help contribute, too. If we can give her a few dollars a month to help her out, while we get our needs fulfilled, so much the better.

Now that the altruistic part of me has been stated, here are all the selfish reasons behind the new hire.

It is a very, very long time between Friday at 3PM and Monday at 8AM. I am completely locked in and must be with him and available for him for the entire time. When my old body has had enough, I tend to get crabby and smart mouthed with Dennis. This is not great for our relationship.

I hate morning duty with Dennis. There, I have said it and it's out there. With a Saturday gal here, I only have Sunday morning duties, and that I can handle with grace.

I want to keep our relationship less about care and more about loving. It's much easier to love Dennis when I haven't had to do all of the medical parts first.

How selfish do I sound?

Okay, there are those of you out there that will say I am simply taking care of myself, and that is okay. I know this. I also know that I am still his primary care-giver, being with him, alone, for at least 14 hours a day. I am the one whose sleep gets interrupted by his wild dreams and positioning needs. But it still feels a bit self-centered to me.

There goes my direct route to heaven down the toilet.

Or maybe not.

I am trying to do what is best for both of us. Dennis does need 1-1 care 24/7. I know that I cannot do this alone and maintain my own sanity. I also know that if I am not in great shape, I am no good to either one of us. This is important for both of us.

Am I trying to convince you, my readers, that I am doing the right thing or am I trying to convince myself? Hmmmmm.....food for thought.

Until later,
Ann and Dennis

I Love This Man!

Dennis has not been feeling well for a few days now. His strength is low, he feels spacey often and he has been having difficulty consuming enough calories each day.

I have been wallowing in my self pity for a much longer time, and have been drinking when I get bored and frustrated.

We both called each other on the other's behavior.Dennis needs to get more calories and I need to be in control when I am taking care of Dennis.

I heard you Dennis. I have been drinking too much and you get scared. My behavior causes you to feel concerned for your own safety and well-being. Will I be able to take care of you in an emergency?

Then you added an out for me. If I wanted to over-indulge, I may, but I need to find a PCA to be with you and care for you.

I just told you to consume more calories.

Is it any wonder that I love you so much?

Until later,
Ann and Dennis

Practicing Retirement

I received a call at work this morning from Raquel. She was throwing up and Dennis was feeling sick. I had to go home.

Once again, thank you boss for being so very understanding.

Dennis felt he had a fever, so I checked his temperature. All was fine - he is running a bit low, as is usual. He was warm, but he was under the down comforter without the fan running or the windows open.

Now he is digging through a drawer of socks and underwear. He has decided to downsize. He also filled a bag with shirts before Raquel left this morning. Mostly white dress shirts, I imagine. He doesn't wear them anymore for obvious reasons (if you have ever seen him eat, it is obvious).

I imagine I am practicing retirement today. How will I fill my day while Dennis is filling his? I believe I had better come up with a game plan.

Until later,
Ann and Dennis

Saying "NO" to Dennis

First, do any of you bloggers know how to get those ads off the top of my post? I have tried everything I can think of, so if you know, please share.

Now, for the business at hand.

A few days ago, I received a frantic phone call from Raquel. She was crying and blubbering about Dennis telling her she was fired. He had also told her he wanted to get out of the car and walk home. I asked to talk with Dennis and when she handed him the phone he said, "No!" Okay, I can understand his saying no. I have done that myself recently with parents that don't want to hear that their children are misbehaving. He knew he did not want to hear what was about to be said.

He did pick up the phone, and he was obviously upset. He was yelling that Raquel was making decisions that she had no right to make! She refused to take him to Micro Center! She had no right to say NO!

By now everyone in the school office was listening in. I left, with several people saying they were happy that they weren't Dennis right now. I must have had on my mean face; the look that says "don't mess with me, I mean business and this silliness will stop right now!" Or, perhaps, they were just embarrassed to have overheard this particular private conversation.

The roads were horrid - it was raining, snowing and blowing. As I drove home I had plenty of time to put together my plan. I would do a mediation. I would listen to both sides and then facilitate a forgiving love-fest between Dennis and Raquel. All would be well once again. Please..............

I knew the problem way before I heard the stories. Dennis does not like being told that he can not do something he wants to do. He has been the boss, he is a man and he is incredibly stubborn. Raquel, on the other hand, did not feel safe about taking him to Micro Center. The parking lot is horrid on the best of days, and she was afraid he would fall. He had also been to the Courage Center for a work out and he was tired.

Raquel and Dennis have spent more time together that Dennis and I have over the past two years. They have had a few tiffs before, but this was a rockin' all out fight. Dennis and I have had many rows in that same amount of time. This was long overdue.

All is well, that ends well. After a few minutes, Dennis and Raquel shared their stories, made up and admitted they adored each other.

I am still letting out a sigh of relief. I really did not want to replace Raquel. I, too, would miss her.

Until later,
Ann and Dennis

Alone

Dennis' afternoon PCA's car would not start today, so I missed my first Latin Fusion dance class. That's okay, I always hate the first class of anything. But I do wish we could find reliable help. It's not that Susanna does not want to work - she does. She is also excellent when she is here. And both Dennis and I like her, quite a bit, it turns out. But she is a poor young mother, without reliable transportation and we need reliable.

Raquel stayed as long as she could - she had to take her grandmother somewhere - and Dennis was alone for a couple of hours. He used to love this alone time and looked forward to Raquel's 2:30 departure and my homecoming at 5:00. Just this past fall he was alone for up to 3 hours on my work days. But today he called at 4:10, worried and anxious. He does not like being alone anymore.

Or rather, he feels anxious when he is alone.

When I returned home in a record 20 minutes (the roads were marvelous!), he was at the table surrounded by food. The first words out of his mouth were, "I anna o u ed." (I want to go to bed) He kept repeating this while I took off my gloves, coat and boots. I kept assuring him that I would be right with him, as soon as I could.

I can't imagine how this must feel. Abandonment? Fear? Frustration?

Anyway, he is in bed, comfortable, and feeling safe once again. And I am here, recording this teeny incident just in case someone may be interested.

Oh, and he ate a ton of food today - so all is well that ends well.

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

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

I Need a Break

I NEED TO GET OUT OF THE HOUSE!

Oh, my, a bit of a rant, would you say?

I have been Dennis only care giver for the past 5 weeks, give or take a day or two when Raquel was here before the surgeries. I am tired and need a day away.

I am expecting Raquel this morning, but she had a bit of trouble lately, and may not be able to show up. Or if she does show up, she most likely will be late. You just never know with Raquel. She has proven to be pretty reliable when I am working, but she falls down a bit when I am on vacation. She would never leave Dennis purposely alone, but she feels a bit less needed when I am at home.

Not true, girl. I need you this week more than I have in a very long time.

And, guess who just walked in! My savior, Raquel. Cheerful, loving, Raquel. Thank you Lord, for delivery her to me, just when I need her most. I can leave the house. I can leave the house. I am free!

Sorry, I am not about to waste any more time writing. I am going to head for the shower and make my way out of here as fast as possible.

Until later,
Ann and Dennis and Raquel

The Silver Lining

No matter how crappy life gets, if you look, something good shows up.

Because of the latest incident of pneumonia, Dennis will now have the services (covered by insurance - HA!), of an RN coming two to three times a week. We met with her today. On Monday or Tuesday, we should hear from a physical therapist to arrange for home visits on a weekly basis.

A year ago, Dennis would have outright rejected the help. Now, although he downplays the necessity, he accepted the offers.

Right now we need this. Dennis is vulnerable, under the care of highly unqualified people. I have absolutely no qualifications, other that a fairly good intuitive sense, to take care of a disabled person. His PCAs, both nursing assistants, have more experience than me, but aren't qualified to do much, medically, either. Even if it's only 60 minutes a week, having a trained and licensed nurse in to take his temp, check his heart, lungs and oxygen, it is more than what we have going for us right now.

Even though today started out rough - with a blood pressure rating of 65/40, it improved all day and ended up with some good news.

Ann and Dennis

An Extra Day Off

Today is President's Day, an extra day off. Dennis asked his PCA to come in late, rather than not come in at all. I am going to be care free, for a few hours.

I have been sitting here for about 15 minutes, re-reading that sentence. I guess I have nothing else to say right now. So, there it is. I will be care free for a few hours. And that is enough.

Upping the Anty

One of the reasons that I wanted to write a daily blog* is to track how Dennis is doing, physically and mentally. It helps me to keep aware of his past, present and future.

I do recall writing about that dreaded call out when I return home from work not too long ago. I didn't realize it was as recent as a week ago.

So, when I came home today and heard Dennis yelling, "Help!", I knew it was time to put my foot down, once again. Oh, how I hate doing this and how he hates hearing this. But it is a natural consequence. He needs to stay where he is after his PCA leaves and until I come home, or we will need to find someone to be here every minute I am not at home.

Right now it has been close to 2 hours that he has been on the floor, in one position or another, because his body is fatigued. He had held himself in place for an hour waiting for me, and he wants to just stay in one place while he recoups. I understand, but I cannot let this happen again.

His falls have reduced since last year, but now he has another non-negotiable regarding taking care of himself. Once his PCA has left, he needs to stay in bed, his chair or wherever he is put, until I return home. Otherwise, we will need to up the anty, once again.

Until later,

Ann and Dennis

*I tried, so hard, to write daily. It was a goal that I was unable to keep.

The Test

I was just becoming satisfied that we had worked out all of our issues regarding personal care attendants, when JoAnn told us, a few weeks back, that should would not be available on Fridays for the month of January. I simply asked Raquel and she said "yes." So I was cool and relaxed when Raquel asked me today if it was next week that we needed her on Friday.

I said yes and Dennis yelled out a huge 'NO!'

As Raquel tripped off to the other room, we began a slightly heated discussion. It might have gotten hotter, but a guy was here fixing an installation problem with our blinds. Neither of us were in to looking like complete fools.

I understand that Dennis wants time alone. I love being alone in my home, and I don't get the opportunity very often. No matter how far away the PCA stays, he is still never alone. I feel the very same way about his presence. But, in reality, it's not the same. I can do anything I want to when Dennis is here. You do put limits on yourselves - like the really good fight we could have had - when someone else is in the house with you.

Oh the other hand, he has not proven to me that he can take care of himself without someone here. He believes he is capable, at least for one day a week.

So, a test for the rest of vacation, seems to be in order.

We are home alone for the next 5 days. If he can show me that he can get out of bed, get dressed, feed himself and get around the house without my help, I will give in to his request. I will not feel at ease, that day at work, but I will give him back his independence, at least one time.

Until the next time
Ann and Dennis

Bitter and Sweet

We have been working on finding people to be with Dennis when I return to work, in two weeks. I am really, really not ready to be back at work. The upside of teaching is having the summers off. The downside, it appears, is the necessity of returning to work. Ah, the bitter and the sweet of my job.

We talked with a company on Friday that provides personal care attendants for the disabled and elderly. The sweet side of using a company is they do extensive interviews with the people the employ. They promise a good match and provide a guarantee that the attendant will be reliable and timely. The bitter side is the price you pay for such a service.

I was hoping to find someone to come in for the first two hours of each day, to get Dennis showered and dressed. Dennis would then have JoAnn, Raquel or Club CREATE to keep him company for the rest of the day. I would be here for the late afternoons and the evening.

It looks good on paper, but does not look good when you start adding up the numbers. It would cost us over 80 of what Dennis earns from Social Security Disability. Yes, I would feel comfortable during the day knowing Dennis is safe, secure, and with people that he enjoys. No, we would not be happy spending two grand a month on care.

We will figure all of this out. We will find a solution that keeps everyone happy. We will find the sweet in all of this.

Until Tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Parkinson's Plus and Shy-Drager

Somedays You Just Need Help

Dennis hasn't been able to get out of bed since we returned from our vacation in Paris. It doesn't seem to be hypotension, but rather just plain low blood pressure. He's exhausted, coughing and choking and not eating well. He did eat toast with jelly, drank his daily portion of Boost and ate a few of the bbq'd ribs I bought for last nights dinner. Of course, just the simple act of putting his hand to his mouth with the food I cut up for him wears him out, so he finally decided to just stay in bed for the day.

I should let you know that my day job is in education, so I am off for the summer and able to spend more time with Dennis. And before anyone reading this thinks or says anything about teachers having 3 months off in the summer and how lucky we are, let me tell you something. That is exactly why I am in education. For the summers. So there.

We hired a PCA last winter when it became completely apparent that I was not going to be able to continue working full time knowing that I might come home, once more, to Dennis sprawled out on the floor in a pool of blood or Coke. We thought she was coming today, but we had forgotten to call her, so I was staying home. Since I have my summers off, it was not a problem. I had tons of laundry anyway and all those pictures of Paris to download and then upload and then share with friends via email and the boomer forum I hang out in all of the time and staying home all day seemed to be okay.

We found Dennis' PCA, Raquel, through Craigslist. I know this is not the traditional way to hire a care attendant, but when we called the organizations on the list that the Parkinson's social worker had given us, we figured we had to find a more affordable alternative. I mean we are already paying those huge cobra payments for his insurance and the co-payments for all the medications and physical and speech therapy and I was NOT going to give up Laticia, my housekeeper who makes the house sparkle every other Saturday. So we decided to find an independent PCA to save our budget.

We needed some help and we found Raquel. But Raquel was not coming with us to Paris.

I knew that Dennis wanted to see all of Paris. I mean ALL of Paris. I also knew that I was not going to be able to push his wheel chair everyday, everywhere. So we asked at the desk of the hotel about hiring someone to push him around for a day. We both wanted to visit the Latin quarter and it has lots of small streets and small hills. Pushing a 150 pound chair and 170 pound guy up even a slightly hilly area is not my idea of enjoying my vacation, so if we were going to see this part of Paris, we simply needed a strong kid.

We found Julien. An 18 year old, who just graduated from High School and whose mother runs an agency that takes small groups on different types of tours around Paris. Seems she wanted he son to get some work, so she lined him up to take us around the Latin Quarter. Julien knows the Latin Quarter well, since that is where he goes to school, so he was the perfect guide and he was also able to push Dennis up the hills and able to hold onto the chair while going down the hills. Sometimes a girl needs a young boy to help out.

Thanks, Julien, for helping us out. Thanks, Julien, for showing us the Latin Quarter and all the great stories.


Until tommorow,

Ann and Dennis