Follow
Share

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.

This question has been closed for answers. Ask a New Question.
Find Care & Housing
I’m sorry this is your husband and your reality. Do you think he feels slowing down means the disease is progressing (even though it is) or afraid the progression will be quicker if he slows done? My husband has early onset Alzheimer’s and we saw a therapist together (it’s beyond his capabilities now) to help us sort through the journey. I still see her and find it helpful as his progression continues.
Do you feel underneath he wants to cut back? If so, perhaps you could tell him it’s becoming too much for you and you’d like a day to spontaneously do things together. That way he’s doing it for you, not because it’s too much. Best wishes.
Helpful Answer (6)
Report

Are you doing all those s just for your husband? I ask, because of your statement ", we all know he (or any of our charges) is/are not getting better or even holding his/their own, but continuing to deteriorate."

There certainly is a lot going on, all the time. Would it ease your burden at all if you found resources to provide transportation to these activities? Or if doing these things for a group, resign and only do for your husband?
Helpful Answer (1)
Report
LexiPexi Jul 2019
Thank you for your response. He really wants to do these things. He use to do more and I have cut back. We've been together 40+ years and always had a good relationship. However, for the most part now - it is hard to know what he is really thinking. I suspect (in his mind) - if he stops, he will not get up again. The doctors have told him, if he originally wouldn't have been in such good shape, he would have been in a wheel chair full time - a long time ago.
(3)
Report
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!
Helpful Answer (9)
Report
LexiPexi Jul 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.
(16)
Report
I truly admire you for all you are doing to help your husband and keep his body and mind occupied. I was tired out just reading your schedule! Do you feel you’re trying too hard? Do you think that perhaps it might be ok to back away from some of these activities and dial them down to, say, three times a week instead of every day? You seem super-invested in him, scheduling his activities, and trying to help him, but as you say, we can’t “fix” what’s wrong.

Again, I really admire you for all you’re doing for him. He is one lucky man.
Helpful Answer (5)
Report
LexiPexi Jul 2019
Thanks for your reply. Yes, I may be trying too hard - that's kind of why I put the question out there. I would want someone to try to help me - the best possible - so feel I should do the same. However, after eight years (when he went in to a real decline from originally being diagnosed in 2002), I'm exhausted. I feel I need to try to continue to stay healthy - so I am around to take care of husband. I'm trying to convince myself, I can still take care of him, but I do not have to do all the 'day to day' items myself - and I'm still taking care of him.
(6)
Report
Thank you for your response and advice. Yes - I do think he feels if he slows down the progression will be quicker (and the doctors have told him that in the past). I'm glad you found a (good) therapist you could both go to and now you alone. I've gone to some one - three times - probably just to talk and perhaps get some guidance. My husband always refused to go - saying it wouldn't be helpful. I finally just took him with me one time (as he can't be left alone and I told him we didn't have any one to stay with him that day) and he refused to speak at all. Regarding other activities - I've told him, if you don't want to go - you know you don't have to go. His response is - no, I want to go. He asks for so little, I feel I shouldn't deprive him of something he still likes to do - in his own way. I honestly don't think he thinks he is as bad as he actually is. In a Parkinson's caregiver support group - it has been discussed. It seems like it is part of the disease - they just don' realize they aren't capable of doing some things - like they did in the past. I've suggested taking another day - to stay home and relax, sit out on the patio by the pool - when the weather is nice, maybe go to a movie, etc. I don't schedule more than two appointments a day. I may cut back on that as well. Thank you.
Helpful Answer (4)
Report

I am highly impressed and enlightened to see your schedule for your husband. You seem like a great partner to have to care so much for his well being in his time of need although I do want to ask you how are YOU doing mind body and soul? I feel as a wife I would try to fulfill my husbands wishes as much as I humanly could but as a caregiver I now how draining that can be. Try to find that healthy line if it is possible.
Helpful Answer (5)
Report

I’m not sure how much your husband benefits from all these activities but I wish I could get mine to do anything. However reading between the lines, it sounds like you are wearing yourself out and you shouldn’t feel guilty about it. Just tell him you’re not getting any younger and you’re finding it hard and try and find a balance. If he insists on going to all the classes find help with this. There should be transport such as a taxi and someone to help him on arrival.
Helpful Answer (6)
Report

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
Helpful Answer (12)
Report

omg what a wonderful spouse you are.. what a wonderful person you are! I’m quite envious of those daily activities.

I have nothing helpful to offer at this moment but will do my best to revisit your post when able.
Helpful Answer (4)
Report

No you know his insurance covers for caregiver to come into the home and help. It doesn't have to be all on you. Look into that the insurance. Should cover 100%. He probably gets Tricare
Helpful Answer (3)
Report
LexiPexi Jul 2019
What insurance? He has Medicare and a supplemental. He doesn't have any long term care insurance.
(1)
Report
I am quite impressed with the Breseden protical and the Amen clinic. Anyone interested should be a google search and get information about them. These programs seem to be-able to answer a lot of questions.
Helpful Answer (2)
Report
LexiPexi Jul 2019
Thank you for your suggestions. I'll look up the information.
(1)
Report
See 1 more reply
You and your husband sound like amazing people. I admire your relationship and loyalty to him. I used to try and take my father out to do activities, and it is true the less activity, the faster the body declines. He had COPD and his heart was operating at about 23% efficiency. In the end, he couldn't even get up to sit with us at table to eat.
I cherish this last bit of time with him. I look at the photos of us in the park, visiting his old friends, at a birthday party and relish those moments. I could see in his face that he was sooo tired, but still engaged, face turned toward the sun.
I hope there are many moments like these for you both lived and to be lived. In the end the housework can wait or someone else can do this for you, the shopping or other duties can wait, use a delivery service it doesn't usually cost much more, but find some time to give you rest and rebuild your energy so you can enjoy these moments.
Helpful Answer (4)
Report

Well, I had to chime in lexi. Wonderful post

When is enough, enough?

I believe you might know, if you are asking this. & what a Great question! I am a 24/7 CAREGIVER
For a woman that has dementia & congestive heart failure. I never stop. Her children don't either but we've scaled back. We Pick n choose what's best for her when humanly possible. But no one goes overboard. EVER. Just love on her😍 a bunch. Maintain her dignity, keep her moving, feed her well, & keep her happy.
We know her time is coming.
But keep a healthy balance for All involved.

I always say, " don't leave regrets"
& if he declined because you said, Enough, would you feel guilty?

You sound like an amazing Duo.
& what a lucky man!
My opinion is, cut back a day occassionally, one of least resistance by him.
I think its time.
By the time you cut back all those classes, he won't or you won't be able to do them anymore. That's alot of classes! Goodness.
God bless
Helpful Answer (7)
Report

You both show the rest of the world what real love looks like - the caring, the respect, the effort to make the best of this situation.  I think there have been a lot of answers to your question on this forum and in the end, it's a decision you both will make. (My Mama and Daddy went through this last year as my Mama's condition indicated it was time for hospice - and they made the decision together.  Up until then, my Daddy and I did anything that my Mama wanted to try.  But they both agreed when it was time to back off and allow her body to let go. They could not have shown me a more precious example of love than those last few weeks.)  My Daddy is a Viet Nam vet that was exposed to Agent Orange and has a disability rating and receives care through the VA.  I was wondering if your husband receives any care through the VA and if there is anything available from them to help you in getting him to his activities as long as he wants to go?  It's just a suggestion. 
Thank you for sharing and letting us see a little bit into your life.  Be sure to take care of yourself and hug your husband for all of us.  A very big hug to you.
Helpful Answer (6)
Report

Since your husband is still ambulatory, you have not even begun to experience the true meaning of caregiving. My mom is bedridden..I clean her poop and even had to disimpact her a few times. I'm used to it. My mom suffers end-stage Alzheimer's, has quit eating and drinking to the point of kidney failure, but I do not regret putting a feeding tube in her so she will not have to die of dehydration -- which can take as long as three weeks. Her kidneys completely recovered due to hydration. She is bed ridden, and I have to manage her bowels, clean her up in bed by myself..but I love my mum and I am still glad she is alive and with me. Despite what she wrote over ten years ago with advanced directives, she wanted help after she woke up from he coma (I asked her did she want to go to the hospital, and she nodded yes twice and even people with end-stage Alzheimer's DO have their moments of clarity). I use the hoyer lift to put her in her easy chair daily. I don't know it's up to you when enough is enough. I mean I could have done what hospice said and just let her die of dehydration, but I cannot stand to watch her die so slowly.

Hospice will not approve a feeding tube...all I did was revoke it (only took seconds), Medicare paid for the hospitalization and tube placement, then reinstated her hospice. Hospice supplies me with a feeding pump, tube feeding, plenty of diapers, wipes, gloves and so on.

I wrote a blog about my experience and I have evidence-based articles to support my decision to have a feeding tube put in mom.
https://mymomfeedingtube.blogspot.com/2019/07/why-i-decided-to-get-feeding-tube-for.html
Helpful Answer (5)
Report
HVsdaughter Jul 2019
Thank you, cetude! I read your article and am so much more informed now. Glad you took the time to do the research and share this important information!
(1)
Report
Hi,

I don't have an answer, I just want to let you know that I love the love you are showing your hubby. Before my Mom got sick, I had to take care of my sick husband for a year before he died at the age of 43. I worked full time and came home and did activities with him. I was always tired at the end of the day, but I thank God for the chance to show my hubby that I was there for him through sickness and health. God Bless you.
Helpful Answer (5)
Report

It sounds like you are going above and beyond. He is lucky to have you. But if he isn't showing improvement, it's understandable for you to wonder whether you should back off. For me, it was being the only one who thought my Mom could regain some quality of life. My sisters did not think she could recover; the nurses didn't. Most of the drs. didn't. I became outnumbered and was worn out, emotionally & physically & finally "caved-in".
Helpful Answer (4)
Report

The two of you need to sit down and negotiate this schedule. Yes, he needs exercise and to get out of the house but is one day of rest enough (for both of you)? Are you doing all the driving? Does he have another buddy that can help him get to one of these classes? You are not being disloyal by taking some time for yourself.
Helpful Answer (4)
Report

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.
Helpful Answer (10)
Report

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.
Helpful Answer (7)
Report

In my opinion when the benefits stop outweighing the myriad costs, it's time to start cutting back. Sadly your husband's deterioration is progressing, and the amount of energy required of you to help him make any gains is increasing and will reach a point where there just is not enough of it.

I experienced this situation with my late MIL who, like your husband, did not want to give up. For 5+ years I helped her to keep going. And I reached a point where I was so exhausted and drained that I got sick. It took me more than one year to recover my health. That experience opened my eyes. I hate to admit it but I would have backed off years sooner had I known.

If you are religious/spiritual, consider seeing an advisor or marriage counselor. Involve yourself in a support group for spouses. Start taking time each day for yourself. Perhaps cut activities down to every other day. Both of you may need more rest.
Helpful Answer (4)
Report

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.
Helpful Answer (8)
Report

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
Helpful Answer (7)
Report
LexiPexi Jul 2019
Wishing you and your father peace.
(3)
Report
See 1 more reply
From what I read you have and continue to do an amazing job. I have been in a similar situation except with my mother. Trying to “make” her happy and cater to her every demanding “whim.” All w/o help or support from two local brothers. (I agree about the posts as far as “do everything possible....”)

Finally, I reached a point of burnout, first mentally and then physically. After three days of thinking through the situation I made a change for myself.

Maybe be it would be good for you to think about what you need and want. This is not selfish, it’s self-preservation and healthy.
Helpful Answer (6)
Report
LexiPexi Jul 2019
I know..., but somehow it is hard to make the change. Thank you for the encouragement.
(3)
Report
I’ve just reached this with my mother. She’s always been difficult but now is refusing to go to dr appointments and without them will lose the rest of her vision in her good eye probably in a couple months. I discussed it with her dr and he had a good point, as medical POA I can make decisions for her but no one can force her to abide by them. I’m tired of the verbal abuse truthfully. She just gave my husband a 30 min abuse session because he had to go feed her cat and tried to find the 2 month old glasses she already lost. No gratitude, just abuse. I think I’m done.
Your husband obviously has a will to live. But it’s a rough schedule. Can he go on a bus to his appointments /therapy without you sometimes? Are you just physically worn out? Can you get some help to handle this? Don’t ruin your own health in the process of helping him. Sadly you no doubt will outlive him and then be an invalid yourself.
Helpful Answer (3)
Report
LexiPexi Jul 2019
Thanks for your response and I'm sorry you and your husband are going through this with your mother. Sadly, my husband cannot be left alone - he has stage 4 Parkinson's, dementia and is clinically blind - but a good attitude. He has to have someone with him (or in the house) at all times. Yes, I'm physically, mentally, emotionally and every other lly worn out
(3)
Report
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.
Helpful Answer (11)
Report
LexiPexi Jul 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.
(5)
Report
It will never Be Enough because it is Tough. Even after they Pass on, It is the Memories that you need then to Live with. Right now, My angel, You have this Heart from the Start, God Bless you.
Helpful Answer (2)
Report

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.
Helpful Answer (10)
Report

All Humans acting as caregivers have needs and limitations too.

The Serenity Prayer
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.
Helpful Answer (4)
Report

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."
Helpful Answer (19)
Report
Igotumom Jul 2019
So insightful. Thanks to your Mom for her words too!
(6)
Report
See 1 more reply
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter