My first time writing here. I’ve read so many helpful tips from so many people on here.
My husband was in The hospital in March/April last year. They suspected a TBI. He has never had a “formal” diagnosis of TBI. He came home in April against my better judgment. Then in September he was readmitted to the hospital with confusion and aggressive behavior. He had to be in restraints for two days. He spent 2 months in the hospital then went to assisted living for 3 months. They told me he would be fine at home so being stupid I brought him home March 1st. It has been a mess since then. He has so much confusion in the morning and evening and doesn’t sleep at night. He paces the house all day. He hides stuff and says he never does that. I still work outside the home and my job is 20 miles away. Last week he fell and wasn’t able to get up on his own. I had to leave work and come home. I wasn’t able to help him up and had to call for help. Last night he fell again but we were able to get him up.
I want him to go back into assisted living but he’s fighting me about it. He says I’m just going to forget about him and he guilts me so much.
I guess my question is is how do you get over the guilt? The assisted living facility is a mile from my job and I would see him two times a day when he was there before. I also took him out to lunch and fun outings on my days off. I have nothing but resentment for him now. My life has stopped since all this started a year ago. Also last July my son passed and I haven’t even been able to mourn his passing cause all my focus is on my husband. My job is suffering, my mind is suffering, my sleep is suffering. I have no one to help out with him. It’s just him, me and the two dogs.
Sorry this is so long and I appreciate any tips that y’all might have.
God bless everyone that has the patience to be a caregiver. I’m not cut out for it and I feel guilty. The wedding vows said sickness and health til death do us part. That was 32 years ago. I feel like a total jerk for wanting to “give him away” so to speak.
Thank you all and I hope everyone has a beautiful day.
You sound understandably burnt out. You have to take care of yourself , no matter what you decide with your husband care. I am so so horribly sorry for you and loosing your son. Life just doesn't seem fair sometimes.
You need counseling anyone would with what you have been going through.
There will be a day when you see light at the end of this tunnel, and you will find some peace
Don't think of placing your husband in Assisted Living as "giving him away" but as keeping him safe! You cant give up your job to care for him at home 24/7. In AL, when and if he falls, the staff will pick him up! He'll be cared for by teams of people instead of one exhausted and burned out wife. You can visit him, like you said, and go back to being his wife again.
You're not "breaking your wedding vows" by seeing to it that DH is safe and cared for in AL, not at all. Dementia is a no win situation for all involved and oftentimes, we have to choose the lesser of the bad choices. In this case, it's AL or Memory Care Assisted Living. My mother lived in Memory Care Assisted Living for the last 3 years of her life and was beautifully cared for by people who truly cared about her. I have no guilt at all because I would never have been able to give her that level of care at home.
I'm sorry you're blaming yourself for his disease. Stop doing that and look at things realistically, for both of your sakes.
My deepest condolences on the loss of your dear son.
Best of luck to you.
It is nonsense.
Guilt requires CAUSATION and the ability to fix things.
You didn't cause this and you can't fix it and in trying to do so you are making this much much more difficult for your husband and you.
I think you are close to the time when ALF isn't going to work.
You are going to need MC which is enormously expensive.
You need to start (quietly and on your OWN) to gather infor from elder law attorney about division of assets so that assets for your own care are protected.
You are back at square one. I cannot believe that in all of this there is no diagnosis, so that is where you start. The next hospitalization you call in the social workers on day one and you refuse to take hubby home.
Be honest with him when he is placed. Let him know you are sorry and will not abandon him, will visit and support him, but that you cannot continue in care giving.
I am so very sorry. My heart goes out to you.
Since I don't know what your discussions with your husband have been like (other than he doesn't want to go to AL), I suggest that you stop talking about it for a while. Give it a rest. In the meantime, you can be making plans for him to go. Ask the social workers at the AL what the proper placement for him would be; it may be memory care, not AL. Enlist the help of his medical team to recommend placement. This might require more evaluations, and you and his doctors can present those as routine tests. Next time he falls, don't be so eager to get him up. Call an ambulance and have him taken to the ER. Explain that he has dementia and (fill in the blank). Don't take him home from there. You will have already made plans for him to go somewhere else, and with any luck he'll be at rehab or AL and not with you.
This doesn't mean you aren't honoring your marriage vows - you're still married. You're just not in the line of fire.
My sincere condolences on the loss of your son. I also lost my son at the beginning of my caregiving journey with DH, so I understand better than most what you're going through. I wish you peace in your heart as you navigate these truly hard times.
Not everyone is cut out to be a hands on caregiver , that’s ok . You did NOT cause his conditions . You are doing right by him by finding a place where there is a staff 24/7 to look after him . Then you become his wife and advocate , instead of an exhausted sole caregiver .
Like the posts before mine , something will happen , next time don’t take him home .
If you read the multitude of daily posts on this forum from caregivers in the process of burning out, you will know that you are 1) normal; and 2) not guilty of anything. You are grieving. Aging decline is mostly the loss of a lot of things, one after another, that were unimaginable 32 years ago, and very difficult to accept. But accept it you must.
Count his blessings for him: he's had a lovely marriage of 32 years to a wife who has gone to heroics to be there for him. Many seniors don't have even this much.
On a practical note: do not discuss it with him, he cannot process it properly since his cognitive problems have robbed him of his reason and logic and empathy. You can use a "therapeutic fib" to get him to move there (like, there's a dangerous gas leak in the house that needs to be fixed; there's black mold and the bathroom needs to be gutted; the water needs to be turn off, the electricity, etc). Then you let the facility staff know what you've told them so they can play along (and they'll be glad to).
If your husband isn't on any meds for his agitation and agression, he needs to be. Again, you will need to use a therapeutic fib to get this in place. No need to wait for "buy in" that will never come.
It will feel awful at first but then it will get better for both of you. I wish you peace in your heart on this journey.
If you crack under the pressure of working full time and caregiving him when he's falling this much, you will end up in the hospital yourself, then what happens to him? He gets placed somewhere. He doesn't think about what he's putting you through, because dementia damages his brain. He thinks it's "not fair" to put him back into AL, when he's a fall risk? You will "forget about him?" The reality is he has too many health issues to be alone all day, is a fall risk and dementia makes him only care about himself. He stews all day pacing the house.
You didn't cause his health issues, or cause him to get old. I'm sure you have spent hours taking care of him, and still worked. I imagine you got him ready before work, and hours of care later after you got home. Don't waste your energy trying to reason with him. Your option is hiring home care during the day, so you can work. You still get stuck caregiving him after working all day! The stress is impossible to keep up. Did he ever caregive his own parents at all? I doubt it.
Meanwhile, stop trying to convince him to go back to his AL. Call his doctor to get him some calming meds. Tell him they are vitamins. Call the AL where he was and get a new application/reservation for him ready. Next time he falls (which will be within a few weeks) call 911 to get him taken to ER. Tell him your back is out and let the EMTs help him. Insist he get checked in ER for anything broken.
Once he's in ER, DO NOT go over there and bring him home. Have him sent to his AL by your work. Tell ER staff he is going to his AL and they can transport him. Save your back, your gas money, your mental health and put him RIGHT BACK. Fix that big mistake you made, before you start hating him. He can gripe all he wants, he can't just run out of AL and go anywhere. When you see him later, tell him you have chest pains and your doctor said you cannot do it anymore. You need to work to make money! If you get sick, have a heart attack, hurt in an accident...THEN WHAT?? Who takes care of YOU? He will still have to go back to AL.
You had 32 years of happy times. You aren't getting younger yourself. Make it easier for BOTH OF YOU. He will have to get over it.
You’re “giving him the best care.”
I am very sorry for the loss of your son. It’s awful that you haven’t been able to grieve for him. Grieving is a normal and essential part of loss.
I hate that you have been so preoccupied with your husband’s situation that you haven’t had time to care for your own well being.
I will tell you what my therapist relayed to me. When things start to affect you emotionally and physically it is time to let go of your caregiving responsibilities.
No one can be a super hero. Please don’t hurt your back by trying to pick up your husband when he falls.
You cannot continue to suppress your emotions or ignore your physical needs. If you don’t, and you push yourself, it will backfire on you. You need to get proper sleep in order to function properly at work.
Face the fact that your husband is not capable of being reasonable.
You will have to be the sensible person in your marriage. You know that it’s best for both of you for your husband to return to the assisted living facility.
Taking the first step is always the hardest. After that things will fall into place.
I don’t think you’re feeling guilt. I think you’re feeling incredibly sad about this situation. You’re entitled to be sad. You and your husband were dealt a crappy hand. I am so sorry that you are in this situation.
You have the advantage of knowing that you can return to having a healthy balance consisting of visits with your husband, working and getting enough sleep.
Wishing you peace as you navigate through this difficult caregiving journey.
“No one can make you feel inferior without your consent.”
“Do one thing everyday that scares you.”
“Do what you feel to be right in your heart - for you’ll be criticized anyway.”
”Never allow a person to tell you no who doesn’t have the power to say yes.”
”I am who I am today because of the choices I made yesterday.”
“Nothing has ever been achieved by the person who says, “It can’t be done.”
”Be confident, not certain.”
“You not only have a right to be an individual. You have a responsibility.”
“With the new day comes new strength.”
“It is better to light a candle than to curse the darkness.”
“Often you can often change your circumstances by changing your attitude.”
“You have to accept whatever comes and the only important thing is to meet it with the best you have to give.”
“A woman is like a teabag; you never know how strong it is until it’s in hot water.”
- Elenor Rosevelt
I feel all of Elenor Rosevelt’s sentiments are still valid today. Louc61, you are this woman. We all have these things inside of us.
If you want a few examples, read Lea’s or Alva’s threads. They were brave everyday over and over again. They continue to inspire me on a regular basis. You will get through this.
He ended up in the hospital for edema, confusion and agitation. He will be moved back to the care facility tomorrow. He’s not really happy about it, but it’s the best thing for the both of us.
Again I really appreciate all of you with happy thoughts and great advice. Now I get to start the rest of my life. I think I’ll go see a therapist to sort out everything.
I send prayers for you all fighting for your loved ones. Sometimes it’s time to throw in the towel.
Have a blessed life ❤️