For those who care for someone with Parkinson's disease
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Topic How PD has affected us. Go to previous topic Go to next topic Go to higher level

By hubb On 2011.01.07 00:47
As I have posted several times, my PD spouse was diagnosed 25 years ago (yes we fit into the category that the old should get PD) and we had many many good years; however, the past 3 years or so have taken their toll on both him and me. We went to our son's for Christmas and had all our family there - had all 6 grandchildren and even though he was fairly quiet and had a few times of being disoriented (thinking he had to work on his truck), we had a pretty nice Christmas. On the trip back home, which was about 8 hr car ride, he would make strange remarks and I blamed it on his being so tired, but for the first time, he also became incontinent. He slept a lot the next two days which I thought would probably do wonders for him - but was I ever wrong. Ended up calling 911 on Monday and he is still in hospital - started with probable urinary tract infection, then pneumonia reared its ugly head and what with age and PD as factors, it's still an uphill battle. He's still pretty disoriented and having a really rough time. Thank goodness for two good sons who immediately flew in and are helping me. We have made plans for him to go to a good skilled facility (a/k/a nursing home) where he can have therapy and they will take good care of him. I am so totally exhausted that I am thankful for any and all help I get. I have known, as most PD caretakers know, that this day would be coming, but I still wasn't prepared for it emotionally. Thank goodness, we have had long and meaningful conversations about what he wanted - such as being very adamant about no feeding tubes, etc. and we had medical POA and reciprocable POA and will, all of which are required in this state. So I want to remind the forum readers, that while you have time, disagreeable as it may be, have that conversation - when it comes to trauma time and you are over emotional as it is, it's too late to take care of these matters and it makes everything so much easier to handle when you have the proper documents on hand. My sons and I spent a day looking at nursing homes and are pleased with the one we chose - it's very expensive but I feel they will take almost as good care of him as I would and as upset as I am right now, that's some consolation. So my advice from all these years of caretaking, is get the necessary legal work done NOW, have that conversation so you both know what is desired, because you have enough decisions to make once an emergency occurs. We have a strong family faith and felt we have been guided in the right directions, thanks also to the good doctors, nurses, and professionals who are there to help.

By Emma On 2011.01.07 03:20
hubb, I am so sorry to hear that your husband is going through this. How hard it must be for all of you but what a blessing to have two good sons . You are very dear to me and I will keep you and your family in my thoughts and prayers.

You are absolutely right about the need to have conversations about health care decisions and end of life issues, as well as having paperwork in order. That's true for everyone, not just those who have a disease. My husband and I have done that, not just in one big sit down, but over time starting even before he got Parkinson's and I'm glad for it. Like you, I am sure in my mind of what he wants and doesn't want and I think it will make it easier to make decisions when that time comes, as it has now for you.

Much love and many blessings to you dear hubb. Please keep us updated.

By shakydog On 2011.01.07 08:53
Adding our thoughts and prayers also

Shaky and mylove

By karolinakitty On 2011.01.07 09:21
So Sorry you have to go through this hubb, but awfully glad you have 2 great sons and everything done ahead of time.
Like you said it is a tough thing to talk about, but like you, we have everything in order too, mostly because we have both been through this with parents and knew what we should have had....
Hope you can take a minute to breathe.......

By MJ-Camano On 2011.01.07 11:48
Hubb - so sorry to hear that your husband has taken a down-turn. Hopefully things will turn around soon.

I would also like to remind everyone to have their paperwork in order, as this disease progresses it is so important to have the paperwork for the various doctors and to be able to plan for the future. My husband would not discuss the future and his wishes, we tried many times to get him to talk. He seemed to think there was nothing wrong with him so why discuss his wishes. Over the last year his dementia has progressed to the point that I have to consider placing him in a memory care facility. It is strange, but he now realizes that he is really confused and this is the next step and he is ready for the move. We are taking slow steps, we both visited the facility for lunch, then he will have an overnight stay and gradually move in. This is a hard time for my children & I; but we are convinced he will be happy there with people to talk to and activities daily. At home all he wants to do is sit in front of a TV.

I would also like to encourage caregivers to visit the different homes in your community and check out the finances, etc so if the time comes your will have some knowledge about what is available. My daughter & I did alot of this last summer; all the time wishing there was some other solution, but knowing we had to prepare for the future. None of this is easy, and it is so strange that I can now have some type of conversation with my husband; I try to explain to him that he needs to try to express his wishes and talk to me about his concerns - he has tried to open up a little bit.

By parkinit On 2011.01.09 14:34
hubb - sorry to hear your of your spouse's turn for the worse.

I do hope you are getting some rest now, too, though. I know you must be exhausted.

Blessings and prayers for you and your spouse -

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