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Topic A new way to think about this Go to previous topic Go to next topic Go to higher level

By VioletV On 2016.05.10 21:07
So, I don't quite know what to think.

I had a conversation today over lunch with my husband's wonderful OT. She's known us for almost 4 years -- she's the person who taught him LSVT BIG and has been a wonderful support for us all this time. She's smart, insightful, has years of experience in working with people with PD and other dementias, and I trust her judgement implicitly

We were talking today over how, as his caregiver, I can make sense of where things are. It was a long conversation,but to condense it, I'll say that she pointed out that with his current (and growing) level of dementia, I can back away, some, from the constant effort to keep him functioning at his very best. She made some important points, chiefly that when I am NOT here he gets to relax. He doesn't have to feel that he must push himself to do absolutely everything that he can, despite the struggle it entails.

I had not thought that my encouragement, constant attentiveness, urging and cheerleading could be a burden to him. But -- it made a lot of sense. There are things he can't do easily, and maybe it is not fair of me to insist that he push so hard (at age 81, 20 years into PD) to be as well as he can be, when the fact is that he has dementia, sometimes doesn't know who I am, can get lost going from the family room to our bedroom, is physically weakening, is tired and, at times, ready to just let go and BE.

Partly, I feel relieved, at the thought that it's OK that I hand over some of the caregiving responsibilities to others (and SO grateful that, thanks to his careful planning years ago, we have the means to have that help). It's a strange thought that it's easier for him not to have to be OK for me all the time. This all means that I can pay more attention to my needs. That I don't have to feel guilty for saying to him that I am going to the library for an hour. That my plan to take part of the scheduled caregiver time in our week to take myself and a book to a sweet little tapas bar close to us and sit with a glass of wine and some tasty little dishes, and read, all alone, is not selfish and unloving.

Am I terrible for thinking in this way? Partly I think I'm abandoning him if I'm not with him and pushing, encouraging etc every minute. Partly, I think maybe it's just facing reality to let him be where he is today, and not keep urging him to be where he was yesterday, last month, last year.

I don't have a conclusion yet. This is a very stream-of-consciousness posting. I don't know what this all means, but I'm very interested in what others think.


By LOHENGR1N On 2016.05.11 00:20
Violet, Very insightful post. If I may I'd like to address the latter part of it. And yes I do think it is part facing reality and you're not abandoning him if you're not pushing or encouraging every minute. It is okay to let him be where he is today because no matter how much we try we aren't going to be where yesterday, last month or last year. None of are or can be and with adding in Parkinson's Disease it makes trying to get back to a former shape or time so much more difficult to attempt. I believe in exercising but doing the way We enjoy and sticking to what we like. For years I've had a standing range of motion exercises for my legs now I could have my aide do them with me laying on the floor and her rotating and stretching my legs etc. But I like to get out and walk (over these years the distance has dwindled) I include walking up a path in the woods a hill. I walk up it in the morning and down it in the afternoon, up exercises those muscles used for that and down the same, my doctors move my legs and commend me for sticking to the sheet of exercises while I smile knowing I haven't done those since day 1 but a few minutes climbing the hill and a few minutes descending replace and do as much as 20 minutes to a half hour of motion exercises. So at time we can and should substitute I hate those exercises on paper and found what for me works. I wrote a posting for another site I post on about the many claims and many exercise programs out there for Parkinson's claiming to stall progression or giving back what was thought lost. To which others may say exercise is good and what's the harm? The harm is the stress upon Us with Parkinson's and You our caregivers wanting to help wanting to get Us back to last month or last year. Really We and You can't get us back there the disease is progressing and many bewildered people are left in the wake of these claims. Caregivers may resent we don't want to do the exercises and We may resent being pushed to do them or to try something we're not up to because in your love to help us and your hope for us to get better even a little we may be expected to do something we have no interest in or we see won't help. Before I get rambling on here I better call it quits for the night. Good posting, I'm interested in the input it will garner.

By bksquared On 2016.05.11 03:48
Violet loved the perspective you have offered. Truly I never thought that when I am not around Bill does not need to worry about performing at his best. My physical presence places expectations on him. Not a passing thought. Did I ever consider that being away from me gives him a much needed break, never. But I don't think he did either. He has cognitive problems and might not be able to think about it. His Parkinson's psychologist is the one who keeps telling him too much togetherness is not good for either of us. He can not place a demand on me that I will be there 24/7 for him. She is the cheerleader who demands he has at least one activity a day to keep mentally and physically fit. He has had a process of self-discovery. By trying to participate (sometimes in a very modified way) slowly he has realized but not totally accepted that Parkinson's has changed his life however he is the one in charge of his life and not the disease. For example, he used to golf and was angry that he can not any longer. Very angry at me for continuing to golf without him. Well, he decided to join a putters club. Day One was a disaster. He told me he was never going back he felt like a fool. But two neighbors saw him trying. One told him to come again but with him the next week. He said to Bill not to feel foolish, at our age we all have something. Your something might be more visible than someone else. Bill might totter or even fall but the neighbor and the other men help him now. Bill with his walker has been going back weekly to putt. This week he won second place. Did he feel proud. Now do I feel guilty for doing my nails, reading a book, going golfing, or just sitting and watching the birds while he is away. No - I get to recharge my emotional and physical state. Daily I am grateful that the world still has some very caring and wonderful people in it.

By flowers12 On 2016.05.14 23:53
Violet I had a similar conversation the other day with our OT. She said she's noticed him declining just in the last month. She told me that I needed to think about what's to come and not wait until the time comes that I have to face it right on. I'm looking at him and how he's changing and I'm just so, so sad. I think back over these last 40 years and I'm thankful that we have so many wonderful memories. I never thought that at 75 my husband would be in this condition. I too always try to encourage him and get him to exercise and stay alert. This last two weeks he's yelled at me and told me that all I do is nag at him. He tells me to just leave him alone. He now is having a lot of freezing and I'm afraid he's going to fall down. He's agreed to getting a transport chair which will help in getting him around. After his PT this week it took two of us to get him to the car and in the house. He's also having more dementia moments, even in the daytime now. I'm calling for a doctor appt next week and see what might be done medicine wise.
It was so sad to read your post because I've been thinking about what will happen if I don't keep encouraging him and push him. Will it be pushing him to the end sooner? When do I stop, I'm not ready to give up. Things change from week to week and I'm hoping he will perk up.

By umajane On 2016.05.16 00:11
Very interesting topic.. I have stopped pushing my husband to do all the things I wanted him to do. Pilates was getting too difficult and we dropped that..Also personal training. I think he is relieved and the stress of making appointments was getting so difficult.
Since my husband doesn't seem to care I am focusing on myself so that I can be better for both of us. I have a caregiver daily for at least 3 hours and some evenings. We have wonderful caregivers who take excellent care. My hubby is happy when they arrive. Being together 24/7 is too much in his condition so I am blessed that I can do this.
I just took a 7 day road trip with a girlfriend and he did well with caregivers and family members pitching in.. I'm sad that we can no longer travel or socialize or go to the movies or have dinner out or camp etc etc. I am not getting any younger (I'm 77) so I have decided to take care of me and him instead of just him.
It is such a relief and my family is encouraging me to keep on keeping on.

By Whathappened On 2016.12.02 23:36
Whoa- your post has really hit home. Hello, i'm sharon. I admire your courage Violet. For the past 3 years ive tried to be superwoman, coaching, researching, aggressively taking control. Taking him to craft workshops where he cannot work independently. Trying to fix this. The love of my life, Joe, is slowing mentally slipping away. The sweetest man ever, who never complains. Who will workout with me for hours each week. Yes his body is stronger, balance improved. But it does nothing for his mental functioning.
3 neuro docs and the last one says 'parkinson syndrome' with essential tremor. Dopamine did not work, therefore its not the classic parkinsons. Past 3 days the worst ive seen. He was doing halfway ok prior.
Today he put his shorts on backwards and even put a belt on. Tshirt on backwards too. He just looked in the refrig for a Motrin. Can no longer operate tv remote. Cant operate a coffee maker. Is losing his fabulous golf swing. Will sit and kind of read for hours waiting for me to return home. Wont complain. Im the one complaining. But your post has enlightened me. If its not bothering him, it shouldnt bother me. I need to conserve the mental energy its gonna take to see it thru. I cannot fix this. I cant make him appear normal to the outside world. I can only love him and try, try, try to be nothing but kind to him.

By VioletV On 2016.12.03 09:13
How interesting that Sharon has revived this posting today. I woke this morning thinking about what I learned--that when I was away all day in NYC on business on Thursday my husband had a GREAT day. The housekeeper said he bounced downstairs, had dressed himself, was in a great mood. WHen the young man who is a PM caregiver arrived they moved the porch chairs (belatedly--it's December!!) into the garage (husband mostly supervising), did a little poop scooping, etc. Then when the overnight person arrived (my plane didn't land 'til midnight) I discovered that they had binge-watched 7 episodes of The Crown (which, for my British husband was full of info he could follow from his younger years). I had a good work day in the city (5am flight out, return at midnight, grueling), and he had a terrific day at home. So yes, it does seem that he can do well without the pressure of my presence. When we are at home together he is often tearful, saying how he is failing me and that he can't do what he wants. So, yes. This.

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