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By Maddie52 On 2016.06.22 12:29
My husband has had Parkinsons for 22 years and perhaps because he has had it for so long I came to think that it wouldn't get this bad. It seems that weekly he is getting worse. We made medication adjustments in May and perhaps that is the problem. Usually he can at least walk in the morning but by later in the day he is in the wheelchair. During the night he fell out of bed and I think his nose may be broken. Today I cannot even get him out of bed. I finally got him on a shower chair that I put next to the bed as he was slipping out of the bed when I sat him up. He is now having trouble swallowing as his pills seem to stay in his mouth even when he says he has swallowed them. I do have help portions of every day. Part of one caregivers pay is free rent so I was able to awaken him to help get him back in bed at 4:00 AM.Has anyone had experience with hospice and is it now time for me to have him evaluated? The MDS said in May that it might be a good idea and a Social worker that was coming to the house after he returned home from the hip fracture/dehydration rehab said so too. It just seems like giving up and I don't want him to give up either. But he is worn out and tired from this horrible disease and he is only 68. Everyone's thoughts would be appreciated.

By ljharper62 On 2016.06.22 16:23
Maddie, I'm so sorry. It is such a dilemma. Is he communicative at all? Can he tell you what his wishes are? I would honor his wishes if he can communicate them. If not then follow your heart and make the best decision you can for him.

By LOHENGR1N On 2016.06.22 16:56
Maddie, I don't personally have any experience with hospice but everything I've heard from folks who have had it they are very good. Has His Neurologist ever suggested a small dose of Carba/L-dopa (Sinemet) at bed time? Even a extended release one? Most of the time they don't because they figure We're asleep and not moving about but as the disease progresses going all night without it in our system when we awaken we have so little dopamine in our system it affects our ability to swallow. Some Doctors will say to try including a dose at bedtime others may say to crush up a regular Sinemet in orange juice or apple sauce (ask the Doctor which they would suggest) or even water. They may not know about or had to deal with these problems because they deal with movement but always run any suggestions by His Neurologist before trying them. i can suggest but I'm not in the medical field as anything but a patient. If I remember right there is a dissolve under the tongue form of dopamine tablet. Hospice should also be able to advise you how to get his medicine into his system if he cannot swallow in the morning. Others here who have had hospice will answer you I'm sure. They can advise you on it better than I. Hang in there

By Mary556 On 2016.06.22 18:59
Peace be with you and your husband, Maddie.
If his MDS and SW recommended hospice evaluation, it would be best to arrange for that now rather than wait. It is not giving up. You will be given choices. You do not have to commit to anything.

My Mom had difficulty to swallow her pills for about a year before she passed. If there is a score line on the tablet usually it can be crushed. Our pharmacist was very helpful whenever there was a question. I used to put a few drops of water on each pill to soften for a few minutes, smoosh with a spoon, mix with a bit of apple juice and spoon-feed to my mother.

If by any chance your DH takes Seroquel (quetiapine), that could be a culprit for weak legs. My Mom would get very rubbery and could not stand up or walk after taking her small night dose; we needed to give to her once she was already in bed. Lipitor is another that can cause weak legs.

When my Mom came home from nursing facility last summer her legs were starting to collapse from time to time and a CNA was needed to lift her. Once or twice Joan had to bear all of her weight. It was about four more weeks before Mom died from a sudden acute complication. I am not saying this is the same situation for your husband, but it would be best not to wait too long to get things in place for him if indeed that is what is happening.

My Mom was only in hospice for about a week, a few days in hospital and her last three days at home. My close friend died in hospital last week, just a few days after oncologist told her nothing more could be done medically. Things can happen quickly. But in most cases maybe there is a longer time... a family friend was in hospice for six months and I've heard that other patients receive hospice care for closer to a year.

My family had a very positive experience with our hospice care team.
If you have any specific question, please ask here and I will try to answer.

Best wishes and prayers for all of our loved ones, PWPs and caregivers.

By Maddie52 On 2016.06.22 19:10
Thanks for the responses. He is communicative but he does have significant dementia. His MDS is a neurologist specializing Parkinsons. Some might remember that we were "fired" from our previous neurologist/MDS. Our new DR is wonderful each appointment is only with her (not the PA) and she spends a lot of time and has tried to tweak his meds etc, to get the best result. I wish all could have a Dr. like her. Having the hip fracture in Dec hasn't helped our situation. He does take sinemet at bedtime. She also added a couple of more ER Sinemet during the day and reduced the short acting at sometimes during he day to get a more evened out long lasting result. We do give him his pills in pudding etc sometimes. He takes Parkinsons meds 5 x a day but also diabetes and heart meds. Some of them are so big that some days I haven't given them to him as I am afraid he will choke. I did call yesterday and left a message about the continual decline and about hospice eval. Her office called me today and I have an appointment to see her by myself on 7/5 to discuss the situation. I don't like not having my husband there when I discuss his situation but I think I will feel more open and perhaps some good will come out of this. Just now he asked me if we would ever be able to go out to dinner again. Its not possible as it now takes two people to ever get him out of the house. He is so sad and so am I. This is so cruel.
Hugs and blessings to everyone.
Maddie

By Mary556 On 2016.06.23 08:19
Maddie, you may already know but just in case it may help your DH, regular Sinemet can be crushed (or dissolved) but the extended release form cannot.

By Maddie52 On 2016.06.23 10:53
Thanks Mary. I am starting to crush up the regular sinemet. The ER and the Comtan are becoming problematic. His Lipitor and Metformin are BIG pills so I have to figure out something to do about those. The rest are fairly small so we just do one at a time when it is time for him to take those. Its early in the day and even though he is still in bed he seems a little more lucid today. Hopefully, today will be a good day for all of us and our PWPS.
Hugs

By umajane On 2016.06.23 11:53
Maddie, I am so sorry about your situation. Things are pretty tough at my home too. My husband sleeps and sleeps and has dementia..
I called a Palliative Physician. He came and talked to our family about options. Too early for Hospice but they do have a Transitions Program which I am signing up for today. His internist referred him to home Home Health..They come to the house as he has a few bed sores and check is vitals etc.
This is a scary time and I don't know what to do or think. After these very sleepy days like 2-3 in a row he perks up sometimes...

By mylove On 2016.06.23 12:51
Hugs and strength to both of you.

One other note is on the swallowing issue. I don't know if anyone has tried, or has been recommended to try the new controlled release Rytary. Ben did, and his main challenge with it was that the capsules were HUGE. Three at a time, and though they are coated, they're just very large. It took him a good ten minutes and a lot of liquid just to get them down. And he doesn't have swallowing issues! We just went back to regular sinemet partially due to that factor. Just throwing that out as a personal experience. Ymmv.

By Maddie52 On 2016.06.23 12:55
Hi Umajane,
I hope the Transitions program works out well for you. Perhaps that is what the Dr will suggest for us when I see her on 7/5. I have many questions about hospice and if it means taking him off his meds etc. I will not do that at this point. I thought today might be better or that Gregg would be more alert. Sometimes he can walk (with assistance) in the AM from the bedroom to his chair in the family room but not today. I couldn't even get him into the wheelchair. Had to wait for the caregiver to get here and it took the two of us to get him in the wheelchair and then into his chair. He did eat a substantial breakfast but now after being up for an hour he out like a light in his chair. He sleeps a lot too. Sometimes he perks up too.
I hope you have help at home because I know at this point I could not do it alone. I was lucky to find good private pay help which is so much less expensive. Still I am depleting our savings but it is necessary. I have days that I am very scared too so I know what you are going through. Lets just hope and pray for the best for all.

By cmm On 2016.06.23 13:52
I finally found a solution for swallowing pills-applesauce! One of my husband's doctors said it worked for her mom and it works like a charm for my husband. I keep some of the individual containers on hand upstairs and for travelling.

By umajane On 2016.06.23 18:34
Maddie,
The hospice transition program does NOT take my husband off his meds.. It's basically just support from a social worker and possibly some care giving help.
At least it is somewhere to turn if I have questions besides the neurologist and the internist. The Palliative Care doctor was such a help and made us understand more.
He actually made a house call and we all sat at the kitchen table discussing options.
My husband is so tired, has no pain whatsoever, and is kind and sweet..Mostly its the confusion even more than the PD but it is all related.
I also have private caregivers and they are wonderful worth every penny and I do spend a lot. But he is home and our home is his private nursing home and I will do whatever it takes to keep him here. I wish you the best at this difficult time.

By Mary556 On 2016.06.23 22:35
Yes Maddie, those Lipitor pills are a problem, so gigantic and cannot be cut or crushed. My Mom's cholesterol level was not too bad; we were careful with her diet and Dr kept decreasing the dose until it was the smallest size, but she just could not swallow. It was very upsetting for my dear PWP to choke on that pill every night. It got to the point that Mom told me she felt like hitting someone if Lipitor did not go down. (not like her at all, but she could not take it any more.) So we put them away permanently. next day the Dr's assistant told me that was the right thing to do (in our case anyway). I'm not familiar with Metformin. Some meds can be compounded in liquid form by the pharmacy. maybe worth asking if that is a possibility?
Hugs back to you.

Umajane, it was uplifting to read your post. I did not know there was such a thing as hospice transition program. My Mom had a pressure sore and now my Dad has the same problem. Last summer our dear DanS had recommended alternating pressure air mattress to us. We got the mattress pad version that fits on a hospital bed. It really helps. We have benefit from home health care nurses, too. Sometimes it is a challenge not to be sad when the golden years are not so golden. Hope there will be more relief for you and your husband as well.

God bless every one.


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