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

Since you have caregiver covered/coverage, are you able to move your husband elsewhere? I presume you and he are in the home you shared together, as he progressively declined. Are you able to move into temporary housing? Or rent a room for a year so you have your own space?
If you are able to get 24/7 care, couldn't you move? I don't know what is realistic in this situation - only you know what you need to do.
I believe anyone who responds here in a negative or judgmental tone is projecting their own frustrations being in a situation they feel they have no control over and venting their angry feelings on you.
I would be very interested to hear how the responses you did get here have supported you - in making any changes or changes in how you feel.
As I said before, I applaud you for speaking your truth. Too many feel trapped and angry, and slowly lose their own life, caring for another. It doesn't have to be that way. People can only take so much before they start falling apart themselves.
I hope you get a therapist. And take care of yourself as you need to. Reaching out here seems like a healthy first step.

Good help here: do what you can manage, physically & emotionally, and get some kind of help for the rest! One person cannot do it!! If you aren't healthy and don’t have a life, you are good for nobody! It’s an awful dilemma, but the caregiver matters too!!

I appreciate this question and answers. I take care of a 94 yo MIL at her house, she's nearly blind and doesn't want to leave her house. My FIL is in a nursing home with dementia and losing ability to move his legs and left arm. My 69 yo husband has COPD end stage and Scoliosis. I have good days and bad. Today I felt frustrated and just about had enough. My husband does nothing for or with his Dad and little with his Mom. He makes me feel guilty when I leave to visit my family & g'kids in Fl for 4 days, 1-2x a year. Sometimes I just want to run away. Thanks for letting me vent. Have a blessed day.

I am 60, try to go to the YMCA to take care of me, do all the running of errands, volunteer at Hospice office work, take care of our home, 10 acres and a dog I didn't want. I try to have Girls luncheons. I feel like I'm going crazy and have to demand ME time. Life sucks! I miss my husband and our younger days. I miss MY family in FL.

I have no idea of the background you and your family shared with this man. However, regardless of that information, you must realize that as humans we are all different. Some of us can and will be caretakers. Others simply are not made that way and have to find other ways. No one should be judged harshly or put down for that - it is simply a fact of life. You sound like a vibrant, live person with a good career and I can certainly understand your feelings. He has Parkinson's and he will get worse. I think it is time to consider placing him in a facility where he will be cared for by people who are able to handle that job and give him a chance to be surrounded by other people. I think in this situation, it makes perfect sense - and it will help you maintain your sanity and self-respect. You should not feel guilty. I am a business person and can perform miracles but put me into a job where technology is involved, I would be lucky to put the plug in the wall. You are not cut out for this job of taking care of him. You are not helping yourself, nor him, and you may be putting yourself in a dangerous situation. Please get moving now.

Sorry that I don’t know this but can someone please tell me what DH stands for, also what is OP? Thanks.

I am 57, and my husband is not as advanced as yours is in illness, but I totally understand your feelings. You didn't mention the relationship before he became ill, but if it is anything like mine, there are good reasons you do not want to care for him. My husband has Stage 4 PC (mets to aortic lymph nodes,) Moderate Dementia (doesn't drive,) Heart Disease and GERD. His diet is total junk.  He doesn't care.  He lies to the doctor about how great he eats.  He does walk his 7500 steps per day, and that's probably what's keeping him alive.  He is 72, and hasn't helped one bit since he retired a few years ago.  He can, he just doesn't.  I work fulltime and handle everything as well as his doctor visits since he doesn't drive anymore.  Those reasons with burnout added make it impossible to be a caregiver.  I'm not going to quit work when the time comes, and I'm not going to quit my activities. I hope to add more social activities. He has gone to 4 AA meetings per week in the evenings for years, leaving me to handle all household, homework, yardwork, financial responsibilities.  You'd think he could pitch in when he retired, but no. Nothing.  I pray with all my heart he goes by a quick heart attack, and not the long drawn out decline of Prostate Cancer and Dementia, because I cannot stand the thought of continuing this for very long.    I wouldn't want that for my spouse (nor siblings or parents) if it were the other way around, but he just does not care how tired I am.  He even wants me to spend some of my free time doing something fun with him, after sitting all day everyday while I work, then come home and I work some more.  I am so over this. Mutiple chronic illnesses take the life of both spouses.

You need to keep your quality of life and friendships, employment etc. Giving those up will not make him better and will only put you on a downhill slide. Good for you in admitting you don't see this as a privilege. Being honest with yourself will save you over the long haul.

Quietly move forward and interview, take tours of local facilities. Look up information on sites like Nursing Home Compare. You still care, but are frazzled beyond recognition.

There are additional challenges for somewhat younger, long-term care patients, their spouses, and families. I don't think Medicaid ever anticipated younger families having to face the nursing home stay.

Once your spouse is in a facility you decide if you want a working relationship with the numerous staff/caregivers at the facility. You choose to attend/not attend care meetings. Do/don't visit as you see fit. Attend/not attend family support meetings or events. You can send others to check on his well being. IN other words you do have choices. You have given all you can give.

You will need to maintain a working relationship with the Medicaid/Social Services department of the skilled nursing home. Medicaid requires a lot of financial/administrative dealings with the facility. It sounds like you have enough experience to deal with whatever Medicaid hurls your way.

My husband has been at the nursing home quite awhile. I've observed other families. I've observed other residents who have no family to visit. Our responses and survival modes are all different and there is no cookie-cutter right or wrong approach.

We own our own feelings, beliefs, experiences, and outcomes. What works for others may not work for you or your husband. You will get sick if you don't get relief. It is not a privilege to come home after work if it just makes you more ill - physically or emotionally.

You don't - you can't fix him - he is starting to destroy you, perhaps not with that intent but that is what is slowly happening. You must face the fact that this is your time to care for yourself and you must do whatever it takes to accomplish that. Start looking for a good, safe place where he can go. He will need far more care, physically and emotionally than you are equipped to handle.....and do NOT feel guilty. You are HUMAN.

I am not in as severe a situation as yours, however my husband is a type 2 diabetic does nothing to help himself. He never checks his blood sugar, eats whatever he feels like eating, and sits in a chair all day watching TV. I have tried to get him to change, but he doesn't. I try not to nag, but to encourage him to read labels, cut back a little, etc. If there aren't things in the house that he wants to eat, then he constantly bugs me to go out to eat. It's wearing me down.

We don't have the money to eat out all the time, and he pays little attention to our finances. He is working a few months out of the year, but I don't know how much longer he will be willing to do that. He is almost 69 years old.

Being together all the time is also driving me nuts. He always wants me to watch TV with him, but I don't want to sit all day. Also, I do all the housework and cooking and most of the shopping. If I were to get a job myself (and I have zero marketable skills), I would also still be the one doing everything around the house. Also, I help our daughter out with her children. I'm just not ready to give up even more of my time.

We rent a duplex and it's pretty expensive, but all the housing in our area is expensive. We moved here 2 years ago to be close to family. To top it off, we can't have pets here, and we have always had dogs. Our 2 big dogs both passed away a couple of years ago before we moved and I still miss them.

Anyway, I don't really expect a solution. Guess I just wanted to whine a little bit.

Okay, I'll be the one to ask at the risk of being named the pollyanna of the group. You never stated what the relationship with your husband was like before the illness. Did you love him?

Just curious....surprised no one asked yet. Maybe someone did. I did not read the whole thread. But I agree with Willie. Either way if you've lost all compassion assuming you felt it before then your husband would be better off elsewhere.

I am not in the same situation it is not that I didn't want to care for my husband but I could not come home and find a trail of blood or undress him for his shower and find him bruised from head to toe and he didn't even know he had hurt himself. I tried to find in home care but was unsuccessful because we live in a remote area and we tried adult day care for a year but he hated it. He lived in assisted living for a year 60 miles away and I only got to see him on the weekend but he started needing more care and supervision than he was getting there so he is in a facility now. It is very hard, tiring and scary. There is nothing rewarding about care giving when it comes to cleaning up adult diapers, getting up 3 to 12 times anight when you have to go to a full time job the next day. You have to find what works for both of you.

I would like to respond to Dixieboys remarks that I and others I am sure disagree with.I have taken care of my parents for years 24/7 until they passed away three weeks apart. I have also at the same time and continue to take care of my husband who has advanced parkinsons disease and also had prostrate cancer which required treatment. I felt "honored" that my parents had enough love and trust in me to take care of them and their needs till their time was up on this earth. I considered it a "privilege" to take care of them as they did for me thru out my life. My parents brought me into this world, loved me, stood by me thru the good and bad times .They were always there when I needed them and never turned their back on me . At the time that their health was beginning to decline I wanted and felt "privileged" to be there for them. I was there until they took their last breath of air as I held them close to my heart.
Your remark "anyone who claims it is a privilege is delusional and must be on hallucinogenic drugs".
I don't call it drugs I call it LOVE.......

Wow - thanks so much for everyone's response - I feel better already.  I must admit I posted on one of the most down days I have ever had and obviously it was reflected in my comments.  I will begin contacting facilities as I know they have waitlists.  I have been meeting with a eldercare attorney to put our finances in order so I can protect our assets as much as possible before applying for Medicaid.  In DE Medicaid does a 5 year look back so it will take some time.  We had hospice in about 6 months ago and he did not qualify.  We do have advance directives however he needs the supplemental feedings due to his difficulty swallowing and he is still able to make his own decisions so he wants the feedings.  We moved 2 years ago and made significant modifications to our new house (including an elevator) and I know he wants to stay home.  I will continue to hire additional caregivers so I can do more activities outside of the home,  That is doable just difficult as everything takes so much planning and arranging and there is no spontaneity.  In many ways I am fortunate in that he is not abusive, he is appreciative and we are financially solid.  I think I was hoping after so many years I would have resigned myself to the situation and to my responsibility but I still resent it every day.  I too sleep with my dogs (thank goodness for dogs!!!).  So appreciate the responses and my heart goes out to all of you who are facing difficult, exhausting, sad situations.

Hi. There a quite a few posts using the phrase “for better or worse” or “till death do us part”. As I like to say, yes it does say this but it doesn’t say you have to do it under the same roof

This is the saddest post I have read on this website.

There comes a time when you need help. Now appears to be that time.

Samlil,
What you describe sounds like symptoms of caregiver burnout.

My husband had a massive stroke 9 yrs ago. He was doing very well and could do most everything for himself. He got to where all he wanted to do was stay in his recliner and watch tv. He lost all muscle in legs and arms. I took care of him for 8 yrs with zero help. I finally could no longer do it alone. He has been in a NH for almost 1 year. The sad part is, I don't miss that person at all. I miss my husband very much. All that to say, I completely understand where you're coming from. Please don't feel bad for your feelings. We can only do so much befor we get total burn out. My heart goes out to you and all the rest of us caregivers. No one knows unless they've had to do it.

Sister #6 lives with Mom (Parkinson's) and Sister #1 (developmentally disabled) and is their primary caregiver nights and weekends. The rest of us take 12 hour shifts during the week to give her time to go to work and to the gym or grocery shopping or whatever after work. We make sure she gets time on weekends to do things with her fiance and insist she take vacations. She still gets burned out sometimes. I can't imagine how hard that is for you to really be the only caregiver. Of course you're feeling emotionally blank. You need to look into a residential care facility that is appropriate to his needs for your own health and the sake of your family. In many cases, Medicaid should help cover the costs of a facility.
It takes a village to raise a child. And it takes a village to care for the elderly and infirm. I am fortunate that my family is the size of a village. Your village is so small you need outside care.

You need to talk to an attorney who is skilled with elder law, it is not cheap, but the best money you will ever spend.
I was in the same situation, my husband was very difficult.
His health was declining, in a six month period he was in two nursing homes for four weeks each because of falls.
To protect my assets Ixwent to the elder law attorney she helped set up axwsycto take care of my finances so I wouldn’t lose everything if he had to go on Medicaid.
Our relationship was just care giver and patient, no feelings for each other. But I also felt obligated to take care of him, though he had never done anything to help me.
But I did tell him we were going to have to look for a care facility as he was no longer safe at home.
He passed away that night, very unexpectedly.
My children were the same as yours, but I knew he was the father of our children and that I felt an obligation to take care of their dad, I also felt resentment that I was tied home because of his illness.
Before you make a decision ask yourself how you will feel in a year or two, and just as important if the shoe were on the other foot.
I. am glad I took care of him, no regrets,

Don’t think I have any answers to the many difficulties you are dealing with these days.
i sure wish I did, as I’m in a somewhat similar box,
this is advice I’m giving to all of us. Seek out legal help. Much of anxiety, depression, panic is due to just not feeling emotionally, physically, and financially safe.
”Put on your own oxygen mask before helping others”

I applaud you for writing and sharing your feelings. You've helped so many others by doing so, and hopefully gotten some inspiration by many of the responses here. I am not in a position to identify with you as I work as a care manager and not married to a spouse needing care. With that said, I know or can imagine the depth of stress to you in all ways - mental, physical, your psyche, and spirit.

I realize how expensive this care can be-come.
While this may not even be a consideration, it is possible to divorce so he will have limited funds and perhaps more able to get the care he needs? This may not be an option.

I support you to re-create a quality life for yourself. You have many good years left. You need to keep your own health intact, however you need to do that. Many of us here send you hugs and oodles of support.

Making these kinds of decisions certainly isn't easy.
I feel you took a huge first step in writing in - here.
And, yes. Often I read responses that are anything but helpful/supportive here.
Take what you like and leave the rest . . .

Perhaps a professional, objective therapist to vent your feelings and gain more support to take care of yourself as you need to - now - would help you. We realize whatever you do will be a difficult decision.
Don't go down with a sinking ship. I might sound very cold-hearted to some reading this. However, we individually need to make decisions that support our well-being, while doing what we can for an/other, regardless if married or friends or a sibling. 'In sickness and in health' doesn't mean self-deterioration and physically falling apart or experiencing ill health YOURself to care for another.

Is your husband (or you) affiliated with any church that might help out?
Many seem to have volunteers.

I'd recommend you get 24/7 help for a month and take a vacation.

I just googled compassion fatigue as i had never heard that term before... “ IF YOUR COMPASSION DOES NOT INCLUDE YOURSELF, THEN IT IS INCOMPLETE”
makes so much sense....

Thank you for your very honest question and expressing your feelings, even if they aren't politically correct. You are so young to be dealing with this and this started when you were in your late 40s. You have quite a bit of life left, even though your husband is in the last stages of his. It's not fair at all, is it?

Reading between the lines it sounds like you've gone a bit numb to the situation, and that is understandable. Do not wish yourself sick or dead, that is not where you need to go!

As others are mentioning, it does seem that it is time to seek out a facility. You can visit when it's appropriate and you can start to get back some of your life, to that appropriate of a vibrant woman.

I imagine there will still be quite a bit of adjusting to do and I would encourage you to see a therapist, for your own sake. It's no one's fault that your husband developed this awful disease and it's not your fault that you are still young and healthy.

And no, you cannot, and should not try to handle his 24/7 care on your own. That is not possible. His needs are now beyond what you can handle and this is the best for everyone.

Wishing you the very best moving forward.

Dear Samlil, I take care of my much older husband who has Alzheimer’s, and I understand the frustration and exhaustion you describe. I would not “ask” him if you can look at care facilities, I would tell him that it’s absolutely necessary. That is what I have had to do with my husband. I take my husband to a memory daycare 2 days a week, 5 hours each time. It is my only break from caregiving. He hates to go. I simply told him I could not go on without it. And that if I didn’t take care of my health, then where would we be? Also I think that once you get in a better situation, where he is cared for and you are not so exhausted, your feelings will change and you will be able to feel more compassionate toward him. I feel it is impossible to have a good attitude when you are stretched so far beyond your own physical and emotional limits.
I hope you are able to place him in a good situation, and soon!

If and when he has to be hospitalized talk with social services. They may be able to help get him placed into a facility. That's what I did telling my husband it was rehab. I knew he was not coming back home. He lasted 6 months.

It is time now to take that first Step, As hard as it Gets...Look into a Facility that will Care for him and all of his Special Needs. You may have to Arrange your Finances, Possibly have to apply for Medicaid but someone will Discuss that with you when you find a Place who has their own Social Worker to Best assist you and your husband.

Compassion Fatigue...look it up!  I struggled with the indifference I felt towards my mother, and I found my answer.

I'm surprised no one mentioned the fact that some NH may have wait lists, so it's a good idea to place your LO on several wait lists to improve the odds.  Wait periods can vary from 6 months to more than a year...unless they end up in the hospital first and then it may be easier to get into a NH.

You...and everyone else...are not alone...there may be a stigma of showing our feelings, but hiding them doesn't do us any good either!  There is a name for what you are feeling and it's ok!

Good luck finding the care he needs...and take care of yourself!

Thanks for your honesty, samlil. For some of us... How many of us are in bad marriages we should have ended years ago—how many of us fear that we will end up taking care of someone we have no feelings for? How many of us are doing that right now? How many of us don't divorce because we are afraid we will be the one who needs taking care of? Our society really sucks that we don't have better options for people. We should have a system that works for all of us as we age. It shouldn't amount to people turning away from those people because they don't have the "strength" to take care of someone. Caregiving requires so much internal and physical strength. It isn't any kind of privilege to change somebody's diapers or deal with their rages. I don't have any answers. I know one thing, I don't blame you or judge you. I would say you are suffering from burnout too. Hugs and wishes that you find peace and solutions.

I feel your pain. I pray for forgiveness every day because I am very resentful having to care for my spouse who is on oxygen 24/7 and has vascular dementia. I was in the process of getting a divorce when he was diagnosed with COPD and I stopped the process because I felt sorry for him. Then the dementia diagnoses came and this has caused the biggest problems. I moved from an area where I had lived for over 50 years had friends, doctors etc. there to move near my son. I do not know anyone in the area other than my son and his family plus do not know how to get around. I have always been a very social involved person and now I am lonely and stuck with a demented person who creates problems on a daily basis.
We have him on a waiting list to go into a home that accepts Medicade. In the meantime I am working on my attitude (not feeling so resentful) There are probably others out there doing care giving who feel the same.