What a whirlwind week. Bed in and bed out. Old feeding pump leaving and a new one arriving. Nurse visit, social worker visit, Pastor and another nurse visit. A few new medications, including a patch to dry up the mouth, a dressing called a skeleton band aid for the bedsores and morphine, something Dennis has always dreamed of trying. Two new PCAs interviewing and filling out applications. Calls and emails to inform family and friends of a change in Dennis' care.
Yes, it's been busy, but everyday that something new happens, it's been good. Every person that has come into the condo has been friendly and caring. Each visit has assured us that we have made the right decision to begin hospice care for Dennis.
For the first time in a very long time, I don't feel over-whelmed. For the first time in a long time, Dennis feels free of pain. For the first time in a long, long time, we both have slept through the night.
This may not be a time for great joy, but it is a time for gratitude.
As Dennis said today, we made the right decision once again.
Ann and Dennis
Showing posts with label hospice. Show all posts
Showing posts with label hospice. Show all posts
Thursday, January 6, 2011
Tuesday, January 4, 2011
Hospice, Part III
We found the right hospice.
Do you know that feeling, when someone walks in the room, that the decision is really already made? It wasn't quite that easy, or that swift, but it was close.
When I talked with my therapist last week, I mentioned that I had diagnosed Dennis long before his doctors had given his disease a name. Then we were talking about the last hospice we interviewed and the problem with the feeding tube. I didn't want to do the fighting on this one/ I am tired and I knew the right person could find away around the feeding tube dilemma without having to play games.
So I went online again and looked for a new hospice team. I wrote to two agencies and let them know what our needs were. One wrote back saying they could not help and the other told me their mission was to meet the needs of the patient, whatever those needs were.
We met with them today and after ALL of our questions were answered, we signed up. We only met two of the staff today, but by the end of the week we will have met with two more. A new mattress for Dennis' bed that somehow adjusts his position through-out the night so I don't need to get up every two hours, has already been ordered.
I have been called a good advocate for Dennis, but maybe I am just trying to take care of myself. When he sleeps, I sleep. When he is in good care, I am happy.
This may not be the way we wanted life to turn out, but no matter how life rolls out for us, we always manage to find good people to help us along.
Do you know that feeling, when someone walks in the room, that the decision is really already made? It wasn't quite that easy, or that swift, but it was close.
When I talked with my therapist last week, I mentioned that I had diagnosed Dennis long before his doctors had given his disease a name. Then we were talking about the last hospice we interviewed and the problem with the feeding tube. I didn't want to do the fighting on this one/ I am tired and I knew the right person could find away around the feeding tube dilemma without having to play games.
So I went online again and looked for a new hospice team. I wrote to two agencies and let them know what our needs were. One wrote back saying they could not help and the other told me their mission was to meet the needs of the patient, whatever those needs were.
We met with them today and after ALL of our questions were answered, we signed up. We only met two of the staff today, but by the end of the week we will have met with two more. A new mattress for Dennis' bed that somehow adjusts his position through-out the night so I don't need to get up every two hours, has already been ordered.
I have been called a good advocate for Dennis, but maybe I am just trying to take care of myself. When he sleeps, I sleep. When he is in good care, I am happy.
This may not be the way we wanted life to turn out, but no matter how life rolls out for us, we always manage to find good people to help us along.
Tuesday, December 28, 2010
Hospice, Part II
I had my 50 minute hour with my therapist yesterday, crawling in on my hands and knees. I came away feeling stronger and ready to fight in spite of how my body feels.
I will not settle for a social worker that says "NO" to a feeding tube. A good social worker will fight and scrape to find a way to get what the client needs.
So last night I wrote to a few different agencies that provide hospice/palliative care. And today I received a response from one that is willing to work around the feeding tube business.
We have an appointment next Monday at our home. Maybe they will be a good fit. Maybe not. But at least, once again, I have not given into the rules. One thing I have learned over the years is that there are no absolutes. And today I am feeling strong enough, once again, to find the right fit for Dennis.
And Jane and Ralph are both coming home sometime today. Life is good, once again.
Until later,
Ann and Dennis
I will not settle for a social worker that says "NO" to a feeding tube. A good social worker will fight and scrape to find a way to get what the client needs.
So last night I wrote to a few different agencies that provide hospice/palliative care. And today I received a response from one that is willing to work around the feeding tube business.
We have an appointment next Monday at our home. Maybe they will be a good fit. Maybe not. But at least, once again, I have not given into the rules. One thing I have learned over the years is that there are no absolutes. And today I am feeling strong enough, once again, to find the right fit for Dennis.
And Jane and Ralph are both coming home sometime today. Life is good, once again.
Until later,
Ann and Dennis
Wednesday, November 24, 2010
Hospise
We had a hospice worker come out an explain the process and the services offered by hospice. While we are not quite ready for hospice yet, we are getting close.
Dennis is barely breathing and has been having panic attacks lately. Other changes are coming at us rapidly. He no longer can walk in the hallway. He takes a half a trip around the table and that seems to be the end of it. Which has also led to a weeks worth of constipation. The walks have gotten him going for quite some time now, and we are relying more on drugs than the walks.
Yes, we are still going on the cruise and yes, we have great travel insurance in case something goes wrong. We know that we will need to take it very, very easy during this trip, but that is okay. I have new books for my Sony Reader and we can always find a seat in a covered deck to watch the ocean and world go by. I think I will spend sometime reading to Dennis - I will take along one of his favorite poetry books and the information we just received on hospice.
Life goes on, day by day. And, somehow, we remain happy and looking forward to tomorrow.
Until later,
Ann and Dennis
Dennis is barely breathing and has been having panic attacks lately. Other changes are coming at us rapidly. He no longer can walk in the hallway. He takes a half a trip around the table and that seems to be the end of it. Which has also led to a weeks worth of constipation. The walks have gotten him going for quite some time now, and we are relying more on drugs than the walks.
Yes, we are still going on the cruise and yes, we have great travel insurance in case something goes wrong. We know that we will need to take it very, very easy during this trip, but that is okay. I have new books for my Sony Reader and we can always find a seat in a covered deck to watch the ocean and world go by. I think I will spend sometime reading to Dennis - I will take along one of his favorite poetry books and the information we just received on hospice.
Life goes on, day by day. And, somehow, we remain happy and looking forward to tomorrow.
Until later,
Ann and Dennis
Tuesday, November 2, 2010
Hospice
We visited Dennis' general practitioner today. We had a load of questions, some possible answers and then we asked the tough question. Hospice Care?
A couple of years ago I participated in a survey on hospice care. I found out that very few people take advantage of all that hospice care has to offer. A person with a certain "death sentence" has up to six months to use hospice care. But there are exceptions. We are hoping that since we don't know when Dennis will die, that he will be able to have help come in for as long as he needs it. That may be one month or one year. Or maybe longer.
Most people take advantage of hospice care only in the last few days of their lives. But my understanding is that it can be so much more. I guess we will find out after our visit that is still to be set up. We have only taken the first steps - asking for help.
It's been a traumatic few days. Once again, by being open and honest with each other, I believe we have moved ahead once again. I hope that we are doing right by each other and that we are living best by keeping the movement going forward.
Until later,
Ann and Dennis
A couple of years ago I participated in a survey on hospice care. I found out that very few people take advantage of all that hospice care has to offer. A person with a certain "death sentence" has up to six months to use hospice care. But there are exceptions. We are hoping that since we don't know when Dennis will die, that he will be able to have help come in for as long as he needs it. That may be one month or one year. Or maybe longer.
Most people take advantage of hospice care only in the last few days of their lives. But my understanding is that it can be so much more. I guess we will find out after our visit that is still to be set up. We have only taken the first steps - asking for help.
It's been a traumatic few days. Once again, by being open and honest with each other, I believe we have moved ahead once again. I hope that we are doing right by each other and that we are living best by keeping the movement going forward.
Until later,
Ann and Dennis
Thursday, July 1, 2010
G/J Tube Problems, Again
Once again, the "J" portion of Dennis' tube is clogged. It is just too narrow for the thick, sticky food that we are suppose to use. This time, when I tried to unclog the tube, a balloon formed. It was fun to watch, but not as much fun to try and fix.
So, today we are back at the hospital once again. The staff will assess the problem and either put a new one, the same style, back in or give him a separate tube for the gastric another for the jujunal. I imagine that Dennis is hoping for the first because it is an easier change. I am hoping for the second, but this will mean one more hole in Dennis' abdomen. It will also be a bigger surgery, and more recovery time.
I guess all we can do is wait and see. Perhaps the nutritionist will be able to figure out another alternative.
Until later,
Ann and Dennis
So, today we are back at the hospital once again. The staff will assess the problem and either put a new one, the same style, back in or give him a separate tube for the gastric another for the jujunal. I imagine that Dennis is hoping for the first because it is an easier change. I am hoping for the second, but this will mean one more hole in Dennis' abdomen. It will also be a bigger surgery, and more recovery time.
I guess all we can do is wait and see. Perhaps the nutritionist will be able to figure out another alternative.
Until later,
Ann and Dennis
Saturday, December 19, 2009
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
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
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