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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.

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Welcome to the forum Lou!

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.
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Reply to lealonnie1
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My husband is 24 years older than me. I won't repeat all that has been going on, but I think you realize his care is more than you can handle at home. If the AL is close to your work you can visit often. Maybe you could make little dates where you bring food to eat or bring the dogs for a visit? You have to look after yourself as well and you have your dogs that need mama. It is never easy to watch someone you live decline. I think a lot of the guilt we feel comes from a place of love and feeling helpless to fix things. You are not abandoning your vows. You are still taking care of him, just not trying to do it alone physically. You are advocating for him and staying there to help encourage him emotionally.
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Reply to DoggieMom86
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It's probably just a matter of time before he is in the hospital again. That will be when you tell them he can't come home, and alternative placement will be necessary. The hospital will push back, but just stand your ground. You will prevail.
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Reply to olddude
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Lou, you are fortunate to have found an AL close to where you work, and you already know it's a suitable one. So it seems to me that half the battle is behind you. It's not "giving him away" to find the help he needs. It's taking care of him in the best possible way. I believe that once you're out from under the demands of 24/7 caregiving, you'll relax and be able to do some things for yourself. You'll feel less resentment at that point.

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.
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Reply to Fawnby
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Your “question is is how do you get over the guilt?” The answer is by doing it and making it the new normal.
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Reply to MargaretMcKen
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You’re not “giving him away”.

You’re “giving him the best care.”
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Reply to cxmoody
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Welcome to the forum!

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.
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Reply to NeedHelpWithMom
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Well everyone…I want to thank you all for the kind words, kick in the butt and the ability to see I’m not doing either one of us any good.

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 ❤️
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Reply to Louc61
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NeedHelpWithMom Mar 13, 2024
So very happy to hear this news! You’re doing the best thing for both of you. Therapy helps. Take care. Sending many hugs your way today!
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Guilt is off the table.
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.
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Reply to AlvaDeer
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I understand your distress and have struggled with the same feelings. My husband is 20 years my senior and we've been married 36 years. His decline and the strain of caregiving a spouse is a miserable existence. Please, try your best to not feel guilty. I suggest with the next fall, call an ambulance. At the ER insist you are unable to safely care for him at home. Stand firm and refuse; they cannot force you to take him home. They're required to find rehab placement. Wishing you the best of luck. I know it's a damn hard road.
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