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I'm unable to care for him at home. Thinks he’s well. When he was home I was unable to keep him safe because he fell constantly. Didn’t allow in home care. Just wanted me to do everything for him. He was verbally abusive and demanding. I was beyond burned out physically and mentally.

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Dear soul. You have and are doing nothing to feel guilty about. You have found the best solution for him. False guilt is due to not meeting the (often unrealistic) expectations of others. This is what you are experiencing. It is probably related to the loss you have gone through with your husband's decline. Real guilt is from doing something wrong. You are doing nothing wrong.

Others have given you good suggestions. Not answering all phone calls makes life easier for you. Therapeutic fibs like telling him he has to stay there till the doctor allows him home help, a psychiatric consult for meds to treat his anxiety would be good and so on.

In all of this, look after yourself. Find some other things to focus on. Come back and let us know how you are. You are not alone.
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psuskind1 May 2020
Dear Golden
Thank you for your insightful, spot on understanding of my situation. After reading your response I felt as though I had just seen a psychiatrist! Anytime I doubt my decision, I will re-read your reply.
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When people who have poor or no judgment continue to ask for something that is not in their best interest, it's because, they just don't know any better. He cannot process that staying in the home means continued falls, for which you were not able to assist him. A rational person would get it, but, he doesn't. Also, often, they forget that they have already asked it, and that's why they keep doing it. It might not be insistence, but, forgetfulness. I'd try to look at it rationally, which should help with any misgivings. Another thing to try is to recall the stress, anxiety, fear and exhaustion that entails his care in the home. I'd try to find peace in that you made the best decision for him and yourself.
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psuskind1 May 2020
Dear Sunnygirl
your response was very helpful to me and I will use your suggestions
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I'm sorry you're going through this; it's a very difficult situation and feeling guilty all the time is exhausting. You did the right thing by placing your spouse where he's safe and cared for on a 24/7 basis. It would be the wrong thing to do to subject yourself to his continued abuse at home. Dementia aside, nobody has the right to abuse another person, especially their spouse. That's why an ALF with Memory Care is the best place on earth for such a person; it's a win-win. When he gets acclimated, he may stop pestering you with the "I want to go home" statements. Maybe not, who knows? What you need is a plan of action to deal with him.

First off, I would not take away his phone. My mother lives in Memory Care and I would never take HER phone away b/c that's her only means of communication with the outside world. If she were to start calling 911 all the time, then I'd have to take her phone away. But pestering ME with phone calls is easily handled; just let them all go directly to voice mail and call back ONCE a day at the same time and have a conversation. In other words, develop a routine. This will help YOU more than anything else. You'll be prepared at 7 pm (or whenever) to have The Chat with your spouse and that's it. When the question of coming home is brought up, tell him "You are in the ALF under doctor's orders. If & when he says you can come home, we'll talk about it." Then immediately change the subject. The key with dementia is distraction. Have a list of answers ready if he asks why you didn't answer the phone the other 23x he called that day. When you're able to visit again, maybe things will get better.

Wishing you the best of luck!
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psuskind1 May 2020
Dear lealonnie1

Good suggestions. As I’m writing this I have a new, simple telephone ordered. Hopefully he’ll use it respectfully
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Defer. Pick up every 3rd call, tell him you were mowing the lawn, napping, bathing the cat, defrosting the freezer.... whatever helps to calm him and relax him.

Use the same strategy about the “coming home” question. “When the doctor says you’re stronger, when it gets warmer outside, if MY doctor says I can do what you need, once the paint dries, ..........

The point is to give him an open ended answer that will provide comfort enough for him to adjust to his new surroundings.

It also might be a good idea to find out if his AL has a psychologist/psychiatrist who might be able to help determine the most practical ways to keep his behaviors under better control. It’s also possible that a small dose of medication could be helpful.

For yourself, rest when you can, plan yourself some little treats and enjoyable activities, and trust yourself that you’ve made loving and caring decisions on his behalf.
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psuskind1 May 2020
Dear AnnReid

Your suggestions were very helpful to me. The facility has put him in touch with a psychiatrist who has adjusted his meds.
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My mother is also in memory care. She had a phone at first, the same non-cell phone she and my now deceased father had at home. When I was there visiting, I saw her staring at the phone, trying to figure out how to use it. She was having trouble recalling how to dial. She figured out how to call to the family business number, where the calls were taken by employees who didn't know how to deal with that. She called, saying she was ready to be picked up from the hotel to "go home." She did not recall Dad had passed away and they moved out of "home" months before. She was also agitated by the numerous spam calls that were coming in. The blinking "message" light on the handset bothered her.
Finally, the memory care staff suggested we get rid of the phone, since it agitated her. They told us almost no one in the memory care wing had a phone. They offered to have her call us from the staff phone if we wanted to talk to her on the phone. Eventually, she stopped asking to "go home." We visit in person or by video chat using a device provided and operated by the staff.
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I completely understand how you are feeling because I could have written what you wrote. I have gone through exactly what you are going through. My husband forbid help, thinks he is fine, verbally abusive and sometimes physical. I was at my wits end and called an ambulance to go to emergency room using the excuse that he fell. He actually fell a week before and was fine but I just wanted him out of the house. My son has a friend who is a doctor at the hospital so they did a cat scan of my husbands head and admitted him for two days to give me rest and then he went into a rehab facility. My husband was furious with me. Badgered me constantly to go home. I hated visiting him and so did my children because he got furious when we tried to leave to go home. I would sit with him all day. But I was getting much needed sleep. I was exhausted. He was so obnoxious they kicked him out after a week and a half. He kept getting up at night trying to go home and constantly falling. He actually made it to the front door one day and they put an alarm on his leg. I was able to get him into assisted living memory care but they had to get police because he was very aggressive. Wanted to go home. He was in hospital for 3 weeks and his meds were adjusted. He calmed down but still furious he could not leave, I was sick with guilt. He was accepted back to assisted living and I made the mistake to take him home. Don’t do it. I am up all night with him. Two hours sleep is good if it happens. I have no life as I have to wait on him hand and foot and he has gotten a lot worse memory wise. I cry most days as I don’t know how long I can hang on. So get over the guilt. I know it’s hard but if your husband is safe it’s best for him. I know the hard part is visiting and then trying to leave. Maybe best not to go every day. This is such an awful illness. Never knew what people went through. It’s not just memory, it’s a terrible change in personality and so hard to live with them and have a happy life. I do love my husband and am so sad to see what has happened to him. He is so unhappy and confused. Good luck to you and I will keep you in my prayers.
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Please, don't feel guilty. I promise nothing to my Spouse. I understand the not wanting to be put into LTC, I don't want that either but I do realize that my girls are not going to be able to care for us physically. I have told him I will care for him as much as physically possible.

Your husband will never understand why he can't go home. Just have to continue with little white lies.
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I would get rid of the phone too. If there is an emergency, the staff will call you. Having the ability to call you numerous times a day is keeping him from adjusting to his new home. Tell the staff not to allow him to use the facility phone. Explain that his numerous calls are causing you stress over something you have no control over.

If you do take the phone, make the RN or Administrator aware so they don't have staff looking for it or accuse someone. My daughter says that has happened in the facilities she has worked. A resident is missing their phone. A report has to be generated and staff look high and low, only to find a family member took it.
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lealonnie1 May 2020
Taking away a resident's only means of communication with the outside world is something I see you often recommending. I disagree 100%. Unless a resident is using the phone to call 911 like my aunt with Alzheimer's did, it's cruel to remove their phone! It's easy to allow the unwanted calls from them to go to voice mail; a lot easier than for them to wonder why they are no longer 'allowed' to do the ONE thing in life they like to do. Haven't they already had enough taken away from them? If my mother in Memory Care wasn't 'allowed' to talk to her remaining family members anymore, she'd be DEVASTATED.
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Golden23.....bless you!
Such sweet words and spot on!
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golden23 May 2020
Thank you! 😊
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