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I read a lot of these posts and from time to time get some good ideas / suggestions. However, sometimes when reading some of the questions / answers - I feel we are suppose to do everything possible to try to better the person's life with their disease. I'm finally trying to realize this is the course of life-decline-death. I'm beginning to understand we are doing some of the things for ourselves - not necessary for the best interest of the person with the disease.


My husband was originally diagnosed with Parkinson's disease in 2002 (from agent orange - Viet Nam). As the disease has progressed, the neurologists have given a diagnosis of Progressive Supra Nuclear Palsy. He was diagnosed with Mild Cognitive Impairment in 2014 and is scheduled to be retested later this year - as he has obviously declined. He also is clinically blind - as he can no longer open or keep his eyes open. He has been a trooper and never once has said 'why me'. He is not ready to give up on life and still wants to be as active as he can under his circumstances.


I keep him busy most days of the week. For example -- (there is minor variation depending on the day / classes offered throughout the year, etc.)


Monday - he goes to two Parkinson classes at the MAPC (music therapy and boxing)


Tuesday - I try to save Tuesdays for doctors appointments and/or hydrocycling (bike in the pool)


Wednesday - he goes to Ballet Arizona and does a Parkinson's Dance class / then Ability 360 - for a workout


Thursday - he has PT / OT and speech/swallowing therapy


Friday - for cognitive - he goes to the Musical Instrument Museum for a 1.5 hour class and tour rotating with the Phoenix Art Museum for a 1.5 hour class and tour and then comes home for extensive stretching


Saturday - Ability 360 - work out in gym or aerobics workout in the pool


Twice a month - massage (in the home)


Sunday - rest


and then we start all over again


Exercise has always been important to him and then when he was diagnosed with Parkinson's, it was important for him to continue - to help stay as strong as possible.


From time to time, I ask him if he wants to continue to go - or cut back - as it is getting harder and harder for him (and me) to do so. It's not me that is pushing him to go - it is him wanting to go - and not wanting to give up.


I feel his time away from home is good for him - or he would sit at home in front of the tv listening to it (since he can no longer see) or listen to his books on tape. I feel getting out in the car - some interaction with other people (even though it is minimal - as he doesn't talk much any more) is good for him.


However, we all know he (or any of our charges) is/are not getting better or even holding his/their own, but continuing to deteriorate.


When is enough - enough? When do we (as caregivers / carepartners) stop trying so hard and back off. We cannot fix any of this.

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Ok...STOP ALREADY. StoP the flow. Sit back. Sit down. FIND THE PAUSE. Listen to what u wrote. He wants to live his life and does fine, but u r not living your life. You are living his life for him, not WITH him. If u were living your life WITH him, he would be living your life with you and you would be living his life with him. My suggestion. Try to figure out what your lives both being lived and shared should look like now...My suggestion is...find someone else to take him to these activities 2x a week...Keep the art and music class...and maybe do the dance class 2x a mth. You find something to enhance your life and time...a hobby..
or interest...or just go sit at the library and read and u will find yourself in the stillness 2x a week. Journal while there...read...relax...Find yourself again, but don't expect to find the same person. You have grown within and changed. Look for the new you. And...i would slow down the schedule and be more low key. It is not time to stop. It is time to slow down because he is. He may just be trying to keep making himself because he thinks u want him to more than u may realize. He may be trying to live up to the man he always was because he thinks that is who u love. Let him know less is more...Less striving and that what u truly love is yall together and what u have...not who he is...but who u r together.

Hope this helps at least somewhat. I
am walking this road with my mom. My Mom told me one day, "Honey, stop trying so hard. I am still here. Is that not enough? Just let me do what I can and finish this journey holding your hand. It's enough. Don't try so hard. Ive lived a long and full life. Just let me finish at rest."
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Igotumom Jul 30, 2019
So insightful. Thanks to your Mom for her words too!
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I am in a similar situation. My husband is in a wheelchair (Neuropathy, mild Parkinson's, mild Dementia ) His last Neurologist told me that I could do more for him than he could. ??? I dropped him so fast ! He never suggested anything at all.  My husband is 82 and I am 80. Up until now, we've been going on trips to Florida and Vegas. It's been wonderful but very hard on me. He lives in Depends and the last time at the airport, he had a bout and couldn't hold it. What a mess. Thank goodness for Handicapped bathrooms. So this morning I broke the news that I will have to cancel our trip to Vegas for Sept. He was a little disappointed but understood.  It is so hard to help him down 6 steps to car and all that luggage. Oh no !  My concern is that if something happens to me while we are away, what then ?.....So now he just sits all day and watches TV, He is not unhappy with that . We have a casino near by and only go when he mentions it. He does not want to go to any classes...as I mentioned, it is exhausting for me to get him out of the house...wheelchair and all. Oh, my dear, we have our jobs but we must hang in there to retain our sanity, and I love my husband so much. He has been wonderful for all the 60 years we're married. Hang in there and pray. It helps
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I think it is the one thing I see over and over here, is our expectation that we can make this right, make this better, make this happy, make this good, make this not about loss but about change. And it doesn't work. I knew when my brother was stricken with multiple dx after a car accident of brain tumor, benign but pressing on medulla and ruining balance, inoperable and of probably early onset Lewy's, that with his being 85 and me 77 I could in no way take on his care. I love him fiercely, but I never considered for a second that I could do this. Were this my partner, and not my brother I guess I WOULD be taking on his care without giving it all that much help. And, again, I could not. I don't see how people expect it of themselves. For those who have had excellent relationships with the stricken loved one they feel they owe it to them. And if they have had utterly abusive lives with say a parent they have been trained to be the child who will literally do ANYTHING for a few words of praise that they are a good child, words that they never seem to hear, or hear only as more manipulation. It is very difficult for men I think, to stop. We see they cannot after retirement, and my own guy at 78 is on the constant run with dog rescue work. Struck down with something they STILL don't know how to stop. And quite honestly for me it is time for you to come to some peace with what YOU feel, what YOU need. While my partner runs all to heck and gone constantly with his dog rescue work I garden, read, cook, listen to radio and in general and quite quiet and contemplative, telling myself I SHOULD get out more while I can, yet with little incentive to do so. I think you need a come to god meeting with your man to say what you now can do and cannot. It is sounding to me like a heliocopter parent taking their child here and there and there and here constantly. Just my input. You will do what you ultimately decide is best for you, what you can do, what you can live with. Just saying I am in your corner. If 4 days a week are about him then at least 3 need to be yours. He will have to learn to love the True Crime Podcasts that keep me glued to my chair of an afternoon. Something like books on tape. Good luck. Hope you will update us. We always hear problems on the forum and almost never hear advice on how they are worked through except through the comments of others. Wishing you, one of the heroes out there, the best of luck going forward.
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LexiPexi Jul 30, 2019
Thank you for your response. I really do understand what you are saying (as if this was my friend going through this - I know what I would be saying to her - and my friends have said it to me - but I feel they don't understand because they have never gone through anything like this), but I'm beginning to realize 'I' have to let go. It's not that I think I'm the only one that can do it - or do it right - there just isn't anyone else to do it. We've been together 40 plus years and neither of us have children or siblings - just distant cousins who are older than us and out of state. We do have some funds available to pay for limited part time care (which I've begun to utilize), however, as most people - I need to make those funds last as long as possible - in case he lives a number of years longer. I've tried to take care of him myself - so funds will be there when he gets to a point I can no longer take care of him or if something happens to me.
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For me it was when my DH said, "make me something and I'll try to eat."

I asked him if he was hungry and he said no. I told him to let me know when he got hungry but he never did. I would fix him something and he couldn't eat more than one bite.

He was already 96-1/2 yrs old and his body was shutting down. I allowed him to pass in comfort; he was only bedridden 3 days and only needed adult briefs for the first 2 - then they had to catheterize him. He passed the next day.

I had managed to keep him ambulatory up until 3 days before he passed, and yes I had to hold him up to walk him to the bathroom, but I allowed him to keep his dignity and mobility by assisting him. I miss him terribly but when the end comes, it's kinder to let them go.

BTW, that day that he became bedridden, he was visited by his deceased first wife - I heard him talking to her. That's another telltale sign, when people that are already gone come back to talk to your LO - you know the end is near.
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It's amazing your husband is willing to be so proactive in caring for himself, and that you have provided him the ability to get to his various activities. Being able to spend some real quality time together is as important as the physical aspect of his care. At this point, maybe taking a couple of those days to do something fun together and a day just for yourselves, separately, would be doable? Quality time might be treasured more than all the trips to and participation in various activities.
You have done right by him, and I know you'll still be doing so no matter what you decide. Best of everything to you both.
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Is there any way for you to get a massage in, for you to go to a class or exercise group? If his schedule is precluding you doing some things for yourself too, I think you need to cut back.

I must say, his schedule does sound very fun!
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LexiPexi Jul 28, 2019
I finally hired someone to come in 4 - 5 hours - two times a week - to take him to some of his appointments - so I can get out of the house. Husband cannot be left alone at all. He forgets and tries to stand up and falls. I have alarm pads on the recliner in the family room and the bed in the bedroom - so I don't have to be in the same room with him at all times. He can no longer remember to call me or 'ring the bell' when he starts to get up. With the alarm pad - the alarm goes off - and I have enough time to get to him. By the way - alarm pads are wonderful in my opinion - and less than $100 on Amazon for two.
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You my dear need help and depending where you live it should be available for no cost to you. Start by calling social services. If you get a qualified person they should be able to lead your charge through all avenues of assistance, veterans, medicare, federal, state and local and hospice. Hospice has expanded and they provide so much, including support for you.

For the last year I have been caring for my 95 yo MIL and I take my cues from her. When she continued talking about wanting to die, I called hospice and they have guided me through how to proceed. No more doctors visits, she eats and drinks what she wants subsidized with Ensure, and medication to keep her comfortable to be used at my discression, less than 2 times per week.

Lastly, it is obvious you and your husband love each other very much, all of us caregivers and beneficiaries love each other. We must all meet a balance between our needs and their needs. Our loved ones would be devastated if their needs consumed and damaged us.
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First of all, God bless you. God bless all caregivers. Those of us at home and those of us with loved ones in facilities. It’s all hard. God bless the staff who work at facilities.

It’s been 14 years and counting of caring for mom at home. She has Parkinson’s disease. It never gets any easier. I am preaching to the choir with you. You certainly have your hands full.

It’s hard to know how to handle all of this. Certainly hard for the Parkinson’s patient and just as hard for the caregiver, just in a different way. I’m trying to figure it all out too. I hope we both find what is best for everyone involved. I don’t have answers for you but please accept my caring and support for you and your husband. Keep me in your prayers and I will say a prayer for you and hubby. Hugs!
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LexiPexi Jul 30, 2019
Wish you and your Mother the best - under the circumstances... These neurological diseases are awful as you said - for both the person with Parkinson's and the caregiver.
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I think you are truly remarkable and have gone above and beyond! But I do also encourage you not to forget the oxygen mask analogy. They always tell parents and caregivers on an airplane that in case of emergency they should put their oxygen mask on first before attempting to help those in their care. If you are feeling worn down, you may need to institute more days of rest for your own well being and ability to care for your sweet husband.
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I’ve done a lot of backing off with my dad. You’re very correct in saying we cannot fix any of this. I had to beat my head up against that wall for a good while before accepting that truth. I pray that my dad has peace, whatever that might look like, true happiness in life is gone for him. Life is hard for him, and no amount of help or cajoling from me was making it better. So now he chooses what he wants to do, without me bugging him to do more or try harder. It’s more peaceful for all
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LexiPexi Jul 30, 2019
Wishing you and your father peace.
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