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Topic Let me Take That Responsbility Now Go to previous topic Go to next topic Go to higher level

By parkinit On 2010.10.26 08:30
How do you get the PDer, who, as several others here have mentioned their spouses are, was a well-thought of engineer, has been active in social functions, and continues to partner with me in running a nonprofit organization to give up some of his responsibilities? He believes his cognitive abilities have not declined, even though his PD doctor tells him this is not so.

I'm at the verge of getting really concerned. My PDer recently sold a boat. He said he couldn't find the registration for the boat and said he never had it. He did, because he used to tag it every year. Somewhere along the way, he has misplaced or lost it. He also recently said he was going to pay the registration on another vehicle. When we got to the tag office, I asked where the insurance verification was; He said he never has insured it. I told him I pay for the insurance, and there most surely IS insurance on the vehicle. Well, it turns out when we got home, I found the vehicle tag on his desk and said, "You have already paid for the tag." He said, "I know, I was going to pay for the additional registration." We bought the vehicle 6 years ago. The registration was paid and didn't need paying, but he didn't seem to comprehend this.

Our doctor several months ago told him he was going to have to give up more and more and "let your wife do more." I do pay most of the bills, but am getting worried because when people call to request donations, he commits to them without asking me (I write checks for all donations) if I have not already donated.

We are also involved in running a nonprofit organization and I'm seeing more and more he wants to get up and talk and we are losing interest from patrons because he rambles and is inconsistent in what he says or is unable to follow through on commitments because of his PD.

We have recently added more people to our board of directors for the nonprofit to get more perspectives and people in on the mix, but everyone knows of spouse's illness, so they don't want to rock is boat either.

Help! How do I get a spouse who is used to being a manager and having people answer to him back down and let someone else (namely me) do more for him? He recently started a few new programs within the nonprofit and I told him I had enough on my plate so this was on him. Unfortunately, I could see there was much confusion and people were sending me side notes because of his causing confusion within the program, so I became grudgingly involved.

I am already doing more around the house for him - i.e., fertilizing the yard, doing more lawn work. Also, when does one say, enough? I'm a caregiver, run a nonprofit, clean and do yard work for a fairly large home (which he has refused to give up) and when do you say "We have to give some of this up?"

By packerman On 2010.10.26 09:51
i'm curious about this too. we also help to run a non-profit from our home.
at this point, it's mostly the time factor and the fatigue after doing too much.
but i can see that in the future, the cognitive will come into play.

it's good that you're getting more people involved on your Board of Directors.
is it possible that you could have a discernment to change the Officers duties?
(i.e.--new person/couple become Chairman/Coordinators, different person/couple become Finance person, etc.)
that way, it won't seem like you're the "bad guy"'s just the normal "change of leadership" procedure to give your organization some "new blood/fresh ideas".
good luck,

By MJ-Camano On 2010.10.26 11:49
Your comments bring back so many memories. I must say we have passed this stage now and my husband is mostly content to sit and watch tv. I have taken over most all the decision making, household duties, etc. I must say I really miss the person that I could do things with and have meaningful conversations with.

I can't say I have any great advice, you sort of have to handle each situation as it comes and eventually have the final say in everything. I can look back at things I let my husband do as he had always done them - buy a car, hire help for around the house, try to do household repairs (only to have to call someone else in to fix what he had undone.) The car he bought was full sticker price (something he had never done - he always shopped around for the best deal for his money.) He tried to fix several electrical things without turning off the power. We had given someone a gift of money, my husband called him one day and asked why he didn't pay the money back. Basically there were times when I could discuss these things with him and ask him to please discuss something with me before he proceeded on projects, buying cars, or especially talking of money. He seemed to understand and slowly he let me start handling things.

There is no guide book and I do believe this is the most frustrating thing about the disease - especially when there are congnative issues is the transfer of responsibilities. It makes me feel like I no longer have a life of my own, but I am working thru these feelings. My husband now needs someone here 24 hours, he has been diagnosed with Lewy Body Dementia. He knows he gets confused and forgets things. He is doing really good right now (by good I mean he can take a shower on his own, needs help dressing, can get himself a drink of juice or water, will even take out a small sack of garbage.) He even fried a couple of eggs the other day (1st time in a year) then we left the house for awhile, when we came home I realized he had left the burner on. I totally blame myself as I should have checked this after he cooked. I guess that is the piece of advice I would give is let the person with PD do as much as they can for as longs as they can, but please double check what they are doing and make sure things are done safely. I'm rambling on, but please try to be careful during this faze and take care of yourself as it can be very frustrating.

By Emma On 2010.10.26 13:23
I think you have been given some good advice here, however there will come a point when you have to start being the bad guy. You are the only one who can decide when that time has come. Be prepared for it. I went through this with my husband too. Eventually it got to the point where I had to intervene. I tried to be nice about it but quickly learned that he didn't understand subtlety and had very poor reasoning skills. Hence, I had to start being blunt with him, not cruel, but blunt. It was tough, it still is. As far as donations or anything related to money, if you haven't done so yet get a Power of Attorney. My husband used to make donations, order things from infomercials, etc. I found that if I called those places and explained that he had dementia and wasn't able to make financial decisions most places were happy to refund money, cancel orders, etc. Legally they are not allowed to engage in transactions with someone who is "incompetent" so if there is even a suggestion of that they will back off. Parkinson's is a long tough road to walk, at times it is best tackled with a thick skin. Good luck, we know what you are going through.

By parkinit On 2010.10.26 13:37
This gets a bit sticky as his Power of Attorney is delegated to a local financial institution. I have spoken with our rep there and he said when I or the doctor makes that call (he needs someone to take over), that is fine with them and they will continue to let me pay bills, etc., but they will have control, basically of all checking, etc.

Why did he delegate to a bank, you're thinking? We have only been married for 5 years and we each have our own "financial set ups" so to speak.

I have joint medical POA with his daughters, who are not currently active in his life or take the initiative to visit him.

I do appreciate the other advice. I feel he understands why I've taken over, but then on the other hand, he complains sometimes about "taking everything away from him."

He seems to be quite content to putter around the house and on his computer most of the day with an occasional jaunt outdoors when he feels okay. He doesn't dress himself, he needs assistance taking showers, he has huge incontinence issues that RX cannot help (we've tried several different ones) and he is in a powerchair 80% of the time because of balance/falling issues. He prepares himself snacks, but doesn't cook anymore. He has been told he is stage 5, but early stage 5, I would guess.

By TiredTexan On 2010.10.26 14:37
This is a timely discussion for me...fortunately I have handled our bills, etc. for many years so that is not a factor. And my husband never learned to effectively use the computer, so what used to frustrate me is proving to be a "blessing in disguise" now. He is a life long pastor - who prepared his sermons so well during the week that he almost never took a note to the pulpit. So in retirement has been able to fill in a few times for other ministers at a moment's notice. But now the dementia has destroyed that ability. A couple of weeks ago, a pastor did not show up for a Bible Study here at the Independent Living Facility where we live, and one of the staff - a person we know quite well - called to ask if he might help out. Fortunately I usually answer the phone because he has difficulty understanding callers - and I was able to say "no". I later asked her that he not be called in like circumstances. He always asks who called, etc. - and a week after he told me that next time he thought he could do that. Explaining that he should not talk that length of time, and knowing that he often can't find the "right" words, I tried to reason with him(voice difficulty was his first PD symptom...and dementia quickly became evident also). So what do I do "next time"? Pray it doesn't happen? Needless to say, he can be quite stubborn sometimes - and I don't want him to end up embarrassed if he gets into such a situation and can't handle it. He is completely ambulatory with no balance or gait problem - just not much cognitive skill any more! This goofy disease! I feel like I have virtually no life of my own. I am not a very patient care-giver and sometimes I find that "telling it like it is" is much better than "pussy footing" around an issue.

By karolinakitty On 2010.10.26 20:07
I am truly blessed ....
We had all our discussions about these issues very early. We knew his cognitive issues were on a downhill slide. We discussed and have in place everything legally we need, we have even discussed his "ramblings" with others. As we go on our adventures it seems he wants to tell everybody very long dragged out stories, most folks are polite about it and my guy realized what he was doing. We now have a code for when he starts boring people or rambling on way too much with a certain subject.
I think the hardest part is knowing where to draw the line. I know for me sometimes it is frustrating as i don't know how far i should limit his independence. We always agreed, if it isn't harmful then why stop. As i will put in another post here today, sometimes it's a conflict.

By LC On 2010.10.27 11:40
Rambling on, telling long stories is part of PD. I didn't know that. I'm always telling my PDer that he talks too much, especially to clerks at stores. Recently people look at me when he starts rambling. I don't think he realizes that they know something is amiss with him.

By mylove On 2010.10.27 12:03
Blessedly, that's one of the few symptoms that we deal with so far. It's hard sometimes, and hard to tell your spouse that they are doing what they are doing. I know the story doesn't seem too long to them while they are telling it. In my head I'm thinking that he's diligently including all the details to make sure his listener reallly understands what he's saying, and not necessarily hearing the repetition. The story's not incoherent, they just take a little bit longer than is socially expected to finish.

By TiredTexan On 2010.10.28 23:10
KK, What kind of code have you worked out regarding telling the stories? My PD was a good story teller, but I have heard them all so many times that I know them by memory. However, the details seem to be different with every telling now - as well as just plain wrong sometimes. Then there is the difficulty of finding the words that lengthen the tale. They are usually "old" stories, not "here and now"! I don't like to live in the past!

By karolinakitty On 2010.10.29 20:47
Our code is a simple phrase....

I'm going to go to the ladies

he knows then that it's time to stop and move on......

By parkinit On 2010.10.31 17:04
kk & TT -

KK - There will be many of us "going to the restroom" now. I love that this is your phrase. People may begin to think we spouses all have kidney problems, though! :)

TT - Your mention of "old stories" is so true with my spouse as well. Someone will mention something about a football player from a recent game, and then my spouse will begin his commentary about, "when I played football, I . . . " Again, I think it is a bit of the PD trait for our spouses to do this.

By sarakayhatch On 2010.11.09 17:02
Dear parkinit,
My husband has just been diagnosed with PD. I see a small decline in him every day. It seems his disease is progressing rapidly.
I am a caregiver by profession so I work from3 to 7 hours a day and then come home to him.
I have given myself permission to say "no" to committments that I once had. Caregiving is exhausting, not so physically but emotionally especially if it's for a loved one.
I have noticed also that his "friends" don't talk to him as much. They don't know what to say, I suppose. It breaks my heart.
This disease brings isolation for the person and his caregiver.
I take time to rest my mind and free my spirit so that I am able to take on the awesome responsibility of dealing with his disease.
Also we take it one day at a time and give thanks for the many blessings we do have. Much luck with your lives and future.

By parkinit On 2010.11.14 22:33
sara - thank you for your response. I recently stepped off a board I served on at his request so I can dedicate myself more to his care.

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