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I am a neighbor to a 58-year-old woman who has early onset alzheimers diagnosed 4-5 years ago). Her husband is a long-distance trucker who is gone for at least a week at a time and has no inclination to retire anytime soon. There is a nurse that comes to give her meds at 8 am and makes her breakfast, a home health care worker who comes at noon to put her lunch in the microwave and does the same at 4:30 for supper both times staying 10 minutes or less. So when the husband is gone, and she is by herself, she comes to my house when things go wrong. She is very much into a routine (and I know that is important) but when the TV service was off all day Sunday, she came over every 15 min to see if the tv is working yet. I have had to lock my doors so I can use the toilet, because she just walks in without ringing doorbell. Once she surprised me in bed (my husband had left early for work and not locked the door). I am glad that she has my house as a safe place when husband is on the road, but how much am I obligated to care for her? She often walks with me and my walking partner but does not say a word the entire hour; she often comes over very anxious and I can calm her down. The husband is not computer literate, so I cannot direct him to a website for help... I am unsure as to my involvement. I helped the husband find a local woman who comes to stay with her for 3-5 days a week, but she is not always available, and cannot be there 24/7, although she is very helpful. I am working from home since Covid, and am boss of my own time, but this weekend I am exhausted with continually having to deal with her and need to catch up on my own work. Not sure what my responsibilities are, as the husband is in denial, the adult son who lives half an hour a way wants dad to get her into an Intermediate care facility, but the husband says because of her attachment to her dog, and smoking, he doesn't want her to leave her home. While I have the capacity to deal with all her issues, I am not sure I should be. Any advice?
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Reno Anderson
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I think I am burned-out. I have been caring for my mother for over 10 years (she is 91 now). My mother is aggressive and mean (has always been that way), but now that she needs assistance it is terrible. If I suggest a bath, it is as if I declared war, don't try clipping toenails or fingernails, or cutting hair. She does let me clean her up after toileting and change her clothing. It is a cold war here and if either of us says a word it ends in angry, hurtful comments from her. I have bitten my tongue until I could scream. Responding in a rational tone only makes it worse so I say nothing. She does not act so with others but I am her only caretaker...no one else can or is willing. I live in the woods and there are no respite or aid workers out here. Have checked all the resources. About ready to put her in a home but then she has her dementia spells and doesn't know where she is and is afraid. I hate to think of her at a home, alone during those times. I am really tired. Words of wisdom?????
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Deborah Cox
You are, indeed, ready to burn out. What’s your Plan B if (or when) you collapse? Who will care for Mom then? One of you is headed for a nursing home. Right now, that’s for you to decide. Believe me, I say this from empathy for your situation, AND, esp...from experience. As a wise friend asked me, “Do I need to write you a permission slip to get help for you?”
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Leslie Menges
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Leslie Menges
Thank you for the advice! I hear you loud and clear and have begun steps for a potential Plan B. (and yes, I did need a permission slip to proceed 😔)
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Deborah Cox
So happy to hear this. Good for you and good for your mum! You’ll see!
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My mom lives with me so I am a 24/7 caregiver. I have had her since March 2020. When she came she could walk with her walker. She lost all mobility Nov 9 2020 plus she is incontinent plus dementia has gotten much worse. Every time I think of putting her in a nursing home I can't do it. I am 73 and wish I was stronger. The incontinence really gets to me. She is in a hospital bed in living room so she is not stuck in the bedroom. I have been reading these posts and they give me encouragement.
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Extremely helpful. Thanks for your help for caregivers issues. I was a caregiver for several years and I am now in early stages of dementia. Reading caregivers problems I can only see what many of my client were going through. I only hope I can retain that. Again THANKS.
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My husband has had dementia. Here are a few things I’ve discovered that have worked for me over the last several years. (First of all, full disclosure - we have had a wonderful, trusting relationship for 58 years. That helps in so many ways.)
1. Respect him as an adult. I treat him respectfully and listen to his concerns. (They’re real to him, even if they’re not true.) I try to understand what he’s really worried about, instead of what he thinks has happened. At one point he was upset because he thought I was paying attention to another man. (Totally ridiculous!) I told him there was nobody who could come within a thousand miles of comparison to him. I chose him the first time and I would do it again. That satisfied him. Another time he was sure we had another home and he wanted to go home. (We only have one.) He became very upset that I didn’t want to go home. So I told him I would drive him wherever he wanted me to take him. As soon as we got in the car, he was happy. He wanted me to take him to get a coke. That broke the spell. He was fine after that.
2. Treat him like a child.
a. Give him information he asks for, but don’t volunteer more than necessary. More information leads to more questions, etc. I always tell him the truth, no matter how difficult it is.b. Give information only shortly before it’s needed. Days are confusing and fear of forgetting something makes it stressful.
c. Only offer two choices, not multitudes. Decision-making is difficult for him.
d. When behavior is irritating, distract when you can. Watch a movie, read a book aloud together.
e. Give clear instructions. Sometimes he doesn’t do what is necessary because he can’t remember multiple things at once. “Honey, why don’t you pull your dish closer so you don’t spill it.”3. Relax and laugh a little - not at the person, but at the situation. My husband often remembers (after he’s asked me what today is for the 15th time) that he’s asked me before. I just laugh and say, “That’s ok. You’ve just got a whacked-out calendar.” The other day when he lost bladder control, I told him, “Don’t worry about it. When we get older, our bodies just don’t obey us like they used to!” He was so appreciative that I understood.
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I am knew and i believe my husband has dementia. He will not gety tested for it but his symptoms are all there. Personality change and mood issues and bathroom issues as well as other ones. He refused to sign hippa so our doctor cannot discuss anything with me and this has caused an issue. We have the same doctor so that really makes it hard. I mostly walk around the house on eggshells as i never know what will set him off. I have read the book the 36 hour day and it does help but no one else will listen to me.
