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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.
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LexiPexi Jul 2019
I know..., but somehow it is hard to make the change. Thank you for the encouragement.
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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 2019
Wishing you and your father peace.
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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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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.
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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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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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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.
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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".
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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.
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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
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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!
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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.
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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
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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.
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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.
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LexiPexi Jul 2019
Thank you for your suggestions. I'll look up the information.
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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
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LexiPexi Jul 2019
What insurance? He has Medicare and a supplemental. He doesn't have any long term care insurance.
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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.
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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’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.
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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.
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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.
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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.
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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.
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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 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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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?
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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.
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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.
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