How do you continue to care for a husband with advanced Parkinson's when you really don't care anymore?

I have taken stellar care of my DH over the course of our married life. MANY MANY illnesses and accidents---many more than the "average" marriage. A few were not his "fault" but most were--just due to stupidity and bad choices.

I have never ONCE felt that I was being blessed or sanctified or even appreciated for my efforts. In fact, we are very distant from each other and essentially live as brother and sister. A LOT of that comes from the way he treated me when he was in one of his many health "crises". I am unafraid of being alone, as I am alone now, as far as any real relationship exists. As he is now about 75% deaf, we can't even talk. I yell, and he goes "WHAT?" all day and I am angry and tired of it.

I do know that there is good in what I do and have done. I believe that I am serving the Savior by serving my DH, but honestly? A lot of days it's just is so hard. I miss the man I married and I feel like he had a GREAT life....due to my taking care of 'all the things' and allowing him to be a married bachelor.

It will only get 'worse'. He can work FT but boy, do I hear about how he HAS TO keep working for 2 years and 3 months so I can have health care coverage. I feel awful some days. Thoughts of his retiring make me cry, literally.

I wish I could conjure up the feelings that what I am doing and have done are noticed and appreciated, but I'm too realistic for that. It is what it is.

"we've" planned for the future as has jfbtc---the kids have all said they will NOT take dad in to their homes, but I am more than welcome. This just makes him angrier. In reality, we have things set up for (hopefully!!!!) a good setup so that when we decline the family is NOT discomfitted.

it is NOT an honor nor a privilege to be forced to take care of a person who will never improve, who sucks the life, spirit, and soul out of our existance. Anyone who claims it is a privilege is delusional and MUST be on hallucinogenic drugs!!! This thankkess job is and always will a soul-destroying endeavor that, in the end, NOBODY wins! Privilege my ***!

From your post probably the best thing you could do for your husband and yourself is to give him as much dignity as possible since compassion and the rest are already gone. Find a comfortable solution for him that will free you to live your life and he can live as comfortably as humanly possible for what time he has left. The post was very sad - I struggled with coping with my husband's PD and LBD for years as well and had to put him in an Assisted Living Facility in September. Life has not been the same since for either of him but I love him no less. I miss him terribly and go to see him daily - I still work and I'm very tired at the end of the day but I go because I want to, not out of obligation and guilt. I focus on making him as comfortable as possible as he would me if the situation were reversed. I pray you find some compassion left inside, he can't control his situation and his family is what little he has left. I agree with taking care of yourself but abandoning him completely isn't the answer. Putting him somewhere he can get good care and you can survive is the answer. I think you are suffering burnout which is common.

Don't be hard on yourself. taking care of a person is very hard and painful. I honestly believe that not all people can handle a long painful process as this. we are all different some strong, some not as strong .
The way you described your husbands health I would like to suggest that you contact Hospice. They will evaluate his condition and see if he can be put onto the hospice program. you should read up on Hospice and you will understand much more. They have services that will help you out. nurses that come regularly , medication coverage, cleaning people to help out, day care,
therapy, and much more.
How about family, friends people who can come and talk, sit, enjoy each others conversations. To me it sounds like he doesn't have communication with others, and that is very important.
There are so many services that you can turn to for help. Senior services that come to your home and sit with the patient, in home day care, out of home daycare. Check them out. they are there to help people in need. use the services that are available to you.
Do it, try to help yourself as so you don't fall apart .
My husband also has parkinsons, seven or eight years now. I
know exactly what you feel and what you are going thru. I am strong enough to handle the situation and enjoy my time with him. I recently had lost my dad than my mom three weeks after.
I am having trouble dealing with the loss of both parents mentally. Having lived with the and taking care of them 24/7 , I miss them so much.
Be strong and good luck with whatever you decide to do.

I write from the patient perspective having been diagnosed with early onset ALZ just about 3 yrs ago. I was diagnosed just as we'd begun meeting with a lawyer to set up a plan for our retirement. This included making a Living Trust in the name of my DW, DPOA, Med Directives, Pour Over Wills etc. We then had a second attorney who specializes in Elder Law to review our plans and we were told, everything was drawn up correctly according to our current state laws.

Where I deviate from this is in that I've told all of my adult children what my wishes are for the future. First wish being that my DW and children carry on with their own lives once I am at the point where I need MC. I also told them I'd prefer being sent at least 100 mi from where we live, so that it makes it hard for them to visit, easy for them to live for the living. We have a 12yr old daughter who has been clued in on some things now, more will be shared with her as she matures. My DW is in her early 50's, I'll be 60 this coming July. My DW is in good health and I believe will have many years to live well beyond the time that I have.

I encourage all that read this to take the time and have this discussion with your spouses and adult children, the better informed they are the less conflict there will be among themselves and all will know what dad or mom believes and wants. I think that no matter what we are faced with whether it is ALZ, Parkinson's, Cancers, we owe it to our children and spouses to let them carry on.

We have our faith and practice it , and that has given all of us peace of mind and educated about what the future is going to bring. We've been participating in a local ALZ Forgetful Friends group and that to has been valuable in helping up plan for the future. God Bless all of the Caregivers, Spouses and Patients, no matter the disease. Adult children, keep in mind and put together a plan for your own future care and discuss your wishes with your Dear Spouse. Pass on the wisdom. We can have an effect on the future.

I understand completely. I, too, read all who say they get a reward from providing the care. I am older than you, but I felt it was my duty as a wife and compassionate human to care for him, using all the arguments I've read on these site. Ours was not a good marriage at all and the resentment of caring for him was building without me realizing it. I finally realized how exhausted I was and realized he needed to go to memory care. He was falling, etc. and I had difficulty getting him to appt. etc. The guilt is still there because he doesn't want to be there, I struggle with that. Sometimes i have to avoid coming onto these sites because many posts make it worse, But again, I no longer have to call for help when he's fallen or worry about his medication or someone with him when I want to make plans. It is helping me to "like him again". I can feel compassion and again want to give him a hug or hold his hand.

Caregiving is definitely excruciatingly hard. It is even worse when you're the sole care giver. I am doing it but the difference is I do care for my grandma. I want it to end but I don't want her to die, so weird. I just need help.

I get you and I feel for you but I also feel for your husband as he doesn't deserve this. At this point it is best he is moved to a skilled nursing home for his best interest and yours.

I am in a similar situation with my hubby of 29 years. He is also 10 years older than me. He was diagnosed with Parkinson's over a decade ago and developed dementia. We have been living with declining physical and cognitive health for almost 3 years. The burden is getting more and more difficult for us both. He continues to need more care and I am getting physically and emotionally more tired. I find myself loosing my patience and feeling overwhelmed. I wish he would die to end both of our suffering and financial burden, but he is relatively young and healthy, and neither PD nor dementia are fatal. We could be living this battle for 10-20 more years. I still work full-time and he has only 2 hours of in-home care M-F mid-day. The entire burden is on my shoulders. He is getting increasing more paranoid, anxious, delusional and confused. I want to place him in a memory care foster home for 24/7 care but am holding off due to how to pay for this for many years. He most likely will outlive his pension. I know your pain and you are not alone. Of course we don't want admit that a peaceful end to all our suffering and lack of quality of life would be the best outcome. But I pray daily that neither of us will have to go through this for much longer. I have said a little prayer for you, as well.

I had a similar situation while still working! But my husband has been I'll for at least 20 of our 35 years together. I did have to retire for my own sanity! I am a full time CG now! He is still able to communicate so we enjoy each other's company as friends! I do wish for it to end a lot of the time, but getting away to the gym or grocery shopping helps! He falls so he can't be alone for long! I do feel though that if you can't feel a compassion for you husband you should get him in a facility! You would probably enjoy seeing him when you do and not just to do CG duties! You would be able to see the situation in a different light! My faith does sustain me, but sometimes I complain to the Lord because He knows. I have grown a great deal emotionally over these
Years. I was a very shallow girl with some good things inside I wasn't aware I had! To put your husband in a facility may be what you need though, so don't feel guilty because it all gets real old!

Oh my dear samlil, I think what you are interpreting as "not caring" is the numbness that starts to set in when you have given it ALL. Trauma victims often learn to shut down their feelings in order to survive. At my last support group, one of the caregivers suggested that we are all probably suffering from a form of PTSD. We have lost so much and have had to continue pushing forward without time to mourn. Please take time for yourself. Explore your feelings of loss and vulnerability.

We often stay busy to avoid the situation at home. Lately, I have been getting panic attacks when heading home because I dread being there. Meditation has helped me deal with the stress and acceptance of what I am living through now. "This too shall pass", is my mantra.

As others have suggested, I greatly encourage you to make plans to move your husband to a facility. He will get the care he needs and you will begin to feel less trapped.

Personally, I don't think wedding vows should include 'for better or worse', because sometimes the 'worse' can destroy one or both partners. Having said that, I think 'asking' your husband if he would consider a care facility is perhaps self-defeating. He will probably not like that idea. Perhaps an impartial individual (not your sons!) can help you formulate and facilitate the conversation in which you lovingly prepare your husband for the transition that must begin soon. I care for an adult brain-injured son and can assure you that, although I love him dearly and want to keep him with me, there are many days I would like to toss him out the door. I'm puzzled about your seeming loss of compassion and caring, as you say and wonder what your pre-illness relationship was like. At any rate, I wish you well and hope that relieving yourself of the bulk of care for him will restore some of your compassion and caring about him...and enable you to keep living contentedly and productively!

I so understand. I have had the same experience with some postings here. It's hard to relate when so many on the site see "selflessness" as something everyone should embrace. Worse are some of my own family members who are devout Christians [please do not God shame me for this reference] who keep telling me that "there will be extra jewels in my crown when [I] get to Heaven"...really???? They have not been in my place. I've been caring for my mom for nearly a year and am now looking to place her in a facility. It's a very involved process to pick the best place within her financial situation. I've had help for the last 6 months, but that means people coming and going, no privacy. Probably the worst thing is that if my mom were in her right mind, she would be devastated. She always wanted to "die with her boots on," meaning none of this dementia, incontinence, etc.

I care for my 89 year old mom with end-stage Alzheimer's disease and everything I do for her is a terrible struggle full of stress. I doubt she will live another six months. First of all you are lucky you forged your own life because when my mom dies I will have problems doing that since her caregiving is 24/7 job and one that is not paid.

When she dies I know I will just want to be with her but I'll be forced to carry on. So be thankful you have your own life.

Dont listen to people with their own issues like juzjane! I have been waiting for someone as honest as you for the last 5 years of my cafegjving career! Like you, all ive read is the same and was afraid to tell my truth for fear of being thrown under the bus! But, thanks to you, i know im not alone! For I suffer from burnout also! The only difference between us is your hubby is more terminal than mine and really gets to go into a facility to give you respite time until he passes! Then you could be free of your caregiving duties! Im jealous! I dont wish death on my hubby, i just want him to be well again so that i could get a break from all the stress and stop being his caregiver! I do everything for everyone in my house and like you, I just need a break! Thank you for your courage! You are not alone! Again, thank you, thank you, thank you! Please keep us posted! Hugs!

My mom has told me often and long before the disease set in that she hates my dad. She admits she has no compassion for him and does everything she should not do, i.e. argure with him, try to make him undertand something, etc. Yet, she claims she wants to take care of him. My sister is his primary care giver and I am his healthcare proxy. We encourage her to stay away from him as it is not healthy for either of them. We are keeping him home, he was in a rehab for 2 months and the stress on him and us was unbearable. At least at home he has my sister to care for him. It might be time to consider a facility. I am finding that every family is different. Do what feels right for you, not what others tell you to do, what others do is right for them.

I have deep sympathy for anyone taking care of dementia patients. You must do what you have to do to take care of yourself.
You will have to have help are you will need someone to take care of you. My husband has dementia and I have had a mild stroke due to stress. Don't know where we will go from here as he gets worse. We have home health. They just check on us.

The feeding tube indicates to me that this man does not want to die anytime soon. He was diagnosed at 60 and declined rapidly, which suggests to me that he did not try very hard at all to fight the disease. Is that correct? I know several people living with Parkinson's and they exercise every single day to try and keep the illness from progressing too quickly. He may value quantity of life over quality. And with everything that the poster has done for him, he's got it made.

Samlil - I agree that it is time for him to move to a higher level of care so that you and your sons can live your lives the way that you choose to live them. Clearly your husband is choosing to live his life the way he wants.

Many people her have mentioned bringing in Hospice and I think they are absolutely right. Just bringing in Hospice for an evaluation should help you out considerably providing you get the right Hospice provider in. It is run differently in different states and I think the different outfits who provide it can vary greatly in the way the do that. I would suggest doing your homework first about the various options in your area and how it works, I would think it's important you chose an evaluator that has access to both in home Hospice care as well as a full time Hospice facility and experience with Parkinson's patients and families. As you well know Parkinson's comes with it's own particular issues and caring for a P pt isn't the same as caring for an elderly dementia or Alzheimer's and my guess is yours is not the first or only family in the place you are in (in so many ways having this happen to such a young family makes it more difficult) so there must be Hospice evaluators or social workers/coordinators who are well versed with the particulars and will be able to help council you and your husband through this. They should know exactly how to present the options so that both you and your husband can feel confident in the plan for care moving forward, even if it doesn't include Hospice yet (sounds like it will).

Wow, and I thought I was the only one to have such thoughts and feelings, and feeling so guilty of even thinking that way....now I feel that it is something many think, but are afraid to speak of.
I am in the journey, but it is so slow, it causes me to wonder how much more, and longer.
I am no where near what you have been through, prayers.

For better or worse in sickness and in health. It is hard to be a caregiver if you love dearly, can't imagine how hard if you don't love them.

You've all given me quite an eye-full! I've had RA since I was 37. I am now 66. You have no idea how many times I have considered suicide because I felt that I was such a burden to my husband and children and they would be far better off without me. Sounds like maybe I was right. I've also had to be CG during this time. That really wasn't easy being a handicapped only child, myself! So, I know how both sides of this equation feel.
You said everything I need to know here about your situation:
"I am [very active] and [do not want to] take care of him. I work fulltime and have built a fairly successful care team but I still dread coming home from work and I really [resent] the weekends as I have to stay with him most [most, not all?] of the day." And everything else you said was all about you. Same with your sons. I don't know your family dynamics but it doesn't sound self-sacrificial or supportive.
From one CG to another: By all means, find him a nursing home! It may be hard for him at first but he may find relationships there that will make him feel more cared for than he does with you. I found that felt more at home and less of a burden when I spent some time in the rehab unit of a nursing home. I made some very good friends and actually felt valuable again. He doesn't like being a burden - I guarantee that!

Actually, you are right to be concerned - most caregivers do die before the patient.

7 yrs is a very very long time!

I was a 24/7 caregiver for 2 years and the last 6 months were rough. I was fortunate and managed to keep DH ambulatory until the last 3 days of his life.

I prayed daily for guidance and for my own sanity.

I am praying for your sanity today and that you get some kind of relief.

First off, ignore responses like that from mmcmahon12000.

I don't think it's a case of not caring anymore, it's more not wanting to deal with all that needs to be done and it's overwhelming. Given he will only decline more and require more help, it's probably past the time to consider finding a good place for him. Given all the issues he has/will need going forward, he needs 24/7 specialized care. Age really has nothing to do with the situation, other than you've already given up 7 years of your "best" years and will have to give up more.

"Most blogs I read no one talks about not wanting to take care of a spouse - it is all about what a privilege it is to be a caregiver or even though it is hard work the reward is priceless - well not for me."
 I've read posts/threads here that negate that. Care-giving comes in many levels and some are beyond one person's capability to handle. I knew caring for our mother in my own home was not going to happen. Between her attitude, her age and mine and her weight plus my own back issues, it would have been a nightmare (and like you, I have said many times she'll likely outlive us all!) We started with 1 hour/day aides to check on her, with the intent to increase services/time as needed (she had early dementia at that point, sort of okay, mainly short-term memory issues.) That only lasted 2-3 months and she refused to let them in. On learning the cost of MC, both brothers' initial reaction was to say for that much I'll take her in!!! I warned them this isn't like our parents and aunts taking care of our grandmother, who didn't have dementia. Not even close! Despite going this way, there are still issues to be managed, and of course I get them all! Too much of my time for the last 5 years has been sucked up, never to be regained!

"I am considering asking him if we can start looking at care facilities."
 No point in asking. Start looking/explore all options, plus consult with an Elder Care attorney without discussing this with him. If he is mentally competent still, sure, at some point a real heart to heart will need to happen, but given all his needs, it would be the best for all to find a place for him.

Also, despite what some think, a facility is less expensive than hiring in-home care. Depending on how many care-givers are required and for how many days and how long/day, it can actually cost up to twice or more than a facility would cost! If someone is easy to care for, won't decline considerably and perhaps can maintain a level of need, sure, care-giving at home can be best for all, but given what you have indicated, this is NOT the case.

I suggest checking out various facilities (get their details, they all vary in cost and services provided! We went with a not-for-profit place, one that doesn't require that huge "deposit", which I still don't understand what that is needed for!) Meanwhile, find a good Elder Care attorney to consult with. Financials, POAs, medical directives (these may be tricky if he has already declined to the point where he is considered mentally incompetent), etc to have everything in place. You can even have this attorney review the details of the places you are considering, to ensure you don't get stuck in the wrong place. Also seek out any financial assistance that might be available (Medicaid, VA, etc.) A good Elder Care attorney can assist with those applications as well - we have not used Medicaid, but I understand there are many hurdles!

Lastly, no guilt. You have done what you can and have reached the breaking point. It's time to get him in a place that can provide care for him and you can return to being his spouse. Visiting can be heartbreaking when someone has declined this much and will decline more, but it will give you time and space to breathe again. It allows you to remember the good times rather than thinking how awful it is to return/be home. It frees you up to focus more on you, your job, your friends and interests, and visits not care-giving.

My husband was DX with ALS in 2013. I resigned from being a casa to take care of him. I’m sure is had this longer than 2013. I’ve been taking care of him myself. He had to retire two years before he got his full pension and now our income is half.( I myself has been disabled for 15 yrs. I’m 60. I can not function well due to several ailments. Depression n arthritis and pulmonary problems. ) I only get enough to cover house note. Because of his income etc we do not qualify for Medicaid. Or hospice. Because he would need a respirator n feeding tube. We have had remodeling done to accommodate lifting. I’m 4’11” he’s 5’9”.
My son and his wife moved in and help when they can. They work. And they have two children 2 n 5. I watch them also.
Im going through the same exact feelings and feel awful. It’s like hurry up or I’m going to die which at this point I wish I could. He is difficult he managed over 100 people and now that he’s wheel chair bound I’m the ‘100’ that gets told what to do. He doesn’t have compassion for me and all I go through. Never asks what my dr says or after my procedures if I’m ok. I cook n clean all kinds of messes. I jump up anytime he’s hungry. No schedules. Or when he needs his spit cup needs cleaning or urinal.
Live got no friends. No family of mine in this state. I miss his hugs. His sense of humor is gone. He’s demanding n loud. I haven’t had sex in 8 years. I sleep with my dog as he hasn’t slept in our bed for 3 years.

And I took care of my mom for two years with Levy Bodies disease. Til she died. Before that for a couple of years I took care of my father in law n mother in law. Bladder cancer n 5 th heart attack.

I know how you feel and I feel ashamed. Yes he has family but they are busy.

So I’ll stick it out. I’ve asked him about palliative care. He’s not interested.

Just say prayers. Thank You

Point blank, we are all never too elder to do things in life we hate. Most elder people do not want to go into nursing home or assistant living any more than the average kid does not like school nor having a bed time. We never live long enough to entitlement. If something is needed, it is needed. Like my minister said 2 service ago:
Another point blank: though I know you are talking about spouse and not parent, but in case anyone pitch stones at your sons, caring for parent is way different than caring for kids, even being a single mom is easier. Because parent is always bigger than the children, parents are in position to not take no for an answer, even when they are wrong for not taking no for an answer, There are parents out there who will still smack their kids in their 60s, and the 60 year old kids cannot smack back. Parents stuck in their ways and expect the kids to cater to demand, and put them in unfair positions. Parents had the kids; not the other way around. If a parent was honestly a good enough parent to rightfully want their kids there, be willing to go to a facility selflessly, and if they check on you by phone and visits, or through video chats or monitoring if they have to live too far to visit, be grateful for that much! And if those kids got spouses or kids or both, they come first. Plus, many parents can get a babysitter for their kids, but you cannot just up and easily get or hire a sitter for an elderly.
Point blank: Women are not robots like men believe. For those, due to their belief in God, or just how they were raised, were taught to be submissive to the man, well, the man is to also love the woman like Christ loves the Church and died for it. A man is not to seek love that exalt himself on a pedestal, but a love that is humble and at the bottom of the cross, wanting to serve. It is a lot harder to be the wife than the husband. A wife still having to be a good wife when a man misuses his leadership ( not my words, I promise. I never married, and struggle with that ), so it is tougher for wife to care for husband than the other way around, especially since the woman is expected to do all like a robot with no time for herself. Point blank: I agree with another poster, and wish there was a love button to hit too many times to count! We are human, no one can be the sole caregiver. But sadly, that comes down to that! It is so easy to live your own life full time, while someone is sacrificing way more than a momma of a new born full time.

Whatever works for you, that is between you and the Lord. If people can be caregivers, them by all means. If cannot, as long as you investigate facilities and not just toss them in there, and check in on them to make sure there is neglect or mistreatment, you need time to care for you as well, or you cannot be good to anyone else. You do not want to take problems out on others when it can be avoided....

Seldom are answers so clear on this blog.
find a facility now.
I have a couple of questions, isn’t a feeding tube or perm cath time for facility? If you don’t have the money can you apply for Medicaid or do you lose your home?

I'm answering without looking this up, but there used to be something called the Well Spouse Foundation. I would suspect, if people are honest, that you are not the only one to feel so distressed and exhausted. Caregiving is challenge enough without someone being difficult to communicate with and so physically needy and dependent. When I initially went to a support group, forcing myself to try it, it was for those dealing with Alzheimer's and dementia. A group well-established and rather cliquish filled with devoted and loving spouses. So I did not feel comfortable speaking of the stresses of dealing with 2 elders, one clueless to his demanding nature, and the other having dementia. THen I found a group made up only of adult children which was a world of difference. PLease check in with your local area agency on aging. They may have a caregiver support/respite type program that would give you some weekend time off. Take care...

Dont give up. I just went through that exactly. His body is shutting down. Love him as much as you can. He has not much time left. I agree with seeking hospice. It sounds like its time. Warm thoughts to you. Stay strong!

Yep. Time to bring in the pros. Even if he says no to moving, start looking anyway, with him or without him. Tell him you both need to start planning ahead for the next step.
This housing is Not cheap so be prepared. $6,200+ a Month here in Nebraska. Nebraska, one of the cheapest places in the country to live.
If he is reluctant, speak to your guide at the care homes. They have dealt with this several times and have good ideas to assist you.

Don’t ask. If you can afford it, do it.