My husband was diagnosed 7 years ago and has declined rapidly during that time. He is about to go on a feeding tube at night to supplement nutrition as he has serious swallowing problems. He is permanently catheterized but is somewhat bowel incontinent. He is 67 I am 56. He moves between a walker and a wheelchair. He is very difficult to understand when he speaks. 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 of the day. It is very costly to pay for all of the care as well. I try to be patient as this is not his fault but I really have no feelings of compassion or caring for him. Our sons are 22 and 24 and their feelings are similar to mine. This situation definitely negatively impacted their high school and college experiences. They do not live at home. I am pretty sure the sadness and stress are going to make me sick and I'll probably end up dying before he does!
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.
Soon he will not be able to be left alone at all and I just don't think I can handle it. I am considering asking him if we can start looking at care facilities.
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.
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.
OP - original poster
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.
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.
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.
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.......
I don't know about DE, but in my area of California, if someone needs care in the home, there is a Medicaid funded program for in-home support services. Try looking into that while you are looking for a facility.
What you describe sounds like symptoms of caregiver burnout.
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.
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,
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 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.
makes so much sense....
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.
I hope you are able to place him in a good situation, and soon!
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!
When I taught school years ago, very often the kid who instigated the fight would come to me and tattle on the kid who was only defending himself to the bully and tell me to correct them. I didn’t fall for it because I saw who started the fight on the playground.
The instigator would say, he hit me, to which I responded, saying to him, did it hurt? Of course he would say, yes it hurts. Then I took the opportunity to say to him that he hurt him when he hit him first. I asked him to apologize. I asked the other to forgive and they would work it out and be friends again.
It is so interesting how strong personality traits show up even in young children.
People can be quick to judge or quick to assume something that is nowhere near the truth.
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.