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Topic when is it appropriate for hospice? Go to previous topic Go to next topic Go to higher level

By missmeliss On 2013.08.13 14:04
Hi all, I'm brand new to this forum. I came across it today while grasping at straws for information on when it's time to throw in the towel. My dad has had PD for 16 years. He is 82 and up until July 1st was doing okay at home. It has been a slow steady decline in his abilities over the last 2 years or so. He's had so many falls and injuries including 2 broken collar bones. Unfortunately, he and my mom have refused to move into a more handicap accessible home or apartment. Now, it seems it is too late. July 1st my dad was sent to the ER with aspiration pneumonia, dehydration, acute renal failure, and a urinary infection. He has been in and out of the hospital 3 times since then and sent to a rehab facility in between. He is in the same facility now but was put on Hospice care a week and a half ago because he wasn't progressing in rehab but rapidly declining. They put him on a new drug (serequel?) to help with hallucinations and paranoia. It does seems to help some but also makes him a lot more sleepy. I am told that this is what happens with end stages of PD and it is really tough. Absolutely everything is a struggle now and I know his posture has a lot to do with swallowing difficulties. He can eat and swallow much better when he is able to hold his head up. He's suffered several episodes of total agitation, aggression, and paranoia to the point that he had to be restrained by 6 policemen when he was brought back to the hospital and put in restraints and put on a video monitor. He is still quite strong and was using a walker until he was hospitalized. It is shocking how fast he's gone downhill since July 1st, down a huge step in ability, both mentally and physically. Sometimes he's still lucid and with it and sometimes he's just out of it. Before he was initially hospitalized he was always cognizant of what was going on, could have conversations fairly easily but was just very soft spoken so one had to listen very carefully to him. Now his speech is mumbled and very hard to understand and he is just out of it a lot of the time. He's hallucinating a lot now too. I know he only wants to go home and we'd like to do that for him. Their house isn't accessible for a wheel chair (narrow long hallways, tight corners, stairs etc.). Has anyone else been in this situation? I know the doctors said it was time for Hospice but sometimes I feel like he's not quite ready to throw in the towel. He has some good days and mornings are always better and that's when I feel really guilty and think he should be at home. Mom and I can't handle transferring him from the bed to the wheel chair and the toilet issue is huge. He needs someone with him all the time to try to keep him calm and from getting up out of the chair. The Hospice nurse told us it would be crazy to bring him home before he is completely bed-ridden. I was also told it would be very hard to find caregivers to stick around with the paranoia and aggressive, agitated behavior that he sometimes has. At least he's been in the same room in the rehab care center the entire time and the staff there are wonderful. The doctor said it is better for dad to stay in the same place now and frankly he doesn't really know where he is sometimes and he thinks he is at home. So far the facility hasn't kicked him out but the nurses and aides are afraid of his episodes and mom and I worry about what will happen if he needs to leave. We are taking it day by day. My mom and I are spending all of our free time with him to try to keep him calm and comfortable but it's taking a toll. Has anyone else been in this situation?

By dadsgirl On 2013.08.13 16:33
I haven't been in your situation but am certain I will be. Just sending you good thoughts during this very tough journey.

By jcoff012 On 2013.08.13 18:24
Miss, I am so very sorry for the way you are feeling. Sadly, our family knows what you are going through. It is hard. My MIL lived in NC and we are in CA, so being a caregiver for her was the major responsibility of my FIL and BIL, until the end stages. Then, as usual with our extended families, I flew back to NC to help. About three months before she passed, she fell and broke her hip, then went into a nursing home. She had good days and bad, but mostly didn't know what was going on. Except for me...somehow, she always recognized me, her daughter in law. She used to sit up in bed and tenderly touch my hair. I know she knew me, even if she no longer could talk. Keeping her in the nursing home was a difficult family decision and there were many group meetings. But, the bottomline was she could no longer be under the care of caregivers and day nurses...we tried them all. We knew she needed more care than we could provide.

How you handle this will change your emotional life. But, please, at some point, remember...you ARE a caring, loving daughter who only wants her father to find peace and a life without pain. What I would advise is that you trust his doctor, who has been down this path with others. Please talk to him. Ask him whatever you need to know, so that you can make informed decisions. Do not second guess your decisions...no "what ifs" or "I should haves"...What you do is done out of love for your Dad...and your Mom.

PD is terrible and changes a person, but it also changes those family members who suffer through each decision. So, in my humble opinion, I would suggest that you talk to the doctor on a regular basis, ask for and read all the brochures and books from Hospice, and honor your Dad by showing him you love him til the end.

I think most caregivers need to realize that PWP do not ask for this journey and how we handle it is a reflection of how we live our lives in general. A daughter's love for her Dad is special. I see very plainly that your Dad is a very lucky man to have you so close to him.

Try to rest when you can. Remember, you need to take care of yourself. Somehow, you will get through this difficult time. You really will. Much love and a great many hugs as you face all that is coming.

My name is Jane and my husband, my MIL's oldest son, now has PD, too. Jane

By Mary556 On 2013.08.13 18:36
missmeliss, I have not been in your situation and can only imagine how difficult this must be. Your Dad is in a safe place now. I would trust the Hospice nurse and doctor that it is best for him to stay there. If you bring him home, he could easily be injured. Or you or your Mom could be seriously injured as you try to care for him, especially when he is agitated. The hospice people have experience and training to do what is best in these situations. I do not know your Dad, but sense that he must be so very special that you want to move heaven and earth to keep him beside you. I believe your father wants to be where all of you are safest. He loves you and wants the best for you, too.
Prayers for you and your family.

By parkinit On 2013.08.15 08:55
Miss -

My heart goes out to you and your situation and yes, it may be what may of us face some day. If he is in a safe place and at times thinks he is home - this is good! He has care of nurses and doctors there. Being home alone with a person who at times may become aggressive is putting you and your mom in a precarious and dangerous situation. Be there for him when you can, get the rest you need, and do listen to those doctors.

My prayers are with you.

By Grammy7 On 2013.08.15 23:48
My husband has been in an assisted living facility for a year. Two weeks ago he started on hospice. I agonized over this but his doctor assured me they were not giving up on him. They were committed to doing what is best to make him comfortable and safe. My husband can no longer put any weight on his feet. When the caregivers try to transport from chair to bed or recliner, he needs to be totally carried. He has to be fed all meals. He can't communicate anymore. I do have a greater peace of mind now with hospice on board. They have been a great support for me too. And now there is a team of support for my husband too. They have changed out his wheelchair to something more comfortable and safer. They now supply all the incontinence products and some of his meds. I find comfort in knowing there are more "eyes" on him now. It's not an easy decision to make. I do feel I have made the right decision. I want my husband to get better but that is never going to happen. So I feel I have done the next best thing for him. That is to make sure he is comfortable and pain free.


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