Hi, I'm new to this community. I just took on the overwhelming role as primary caregiver to my mother, age 82, with Dementia. My husband, daughter and I moved in with my mom mid-January, so it's only been a couple of weeks. We have quickly gotten into a routine and we each have our jobs to do for my mother. It all seems to be working very well for us and I'm actually enjoying this extra time with my mom. My daughter has really surprised us at how eager she is to help her "Nana" with anything and everything we ask her to do, which is highly unusual for most 12 year old girls, in my opinion. And, my husband has been wonderful at taking care of all of "his ladies" in the household. He cooks, cleans, does laundry, takes out the trash, practically any and every thing he can to make our lives easier. He has already even encouraged me to have dinner one evening with my girl friends and I went and didn't have one hint of guilty feelings for going because he supported my time away from the house and was there for my mom while I was away a few hours.
My biggest issue is that I have 3 older brothers, 2 sister-in-laws, 2 grown nieces, and 2 grown nephews that RARELY visit or even call my mother. All of these people but two of them, live in our same county, so not but a few minutes away from her. And, I know she has Dementia, and some days are worse than others, but for the most part she is still very aware of what's going on around her and she definitely notices that we are the only people in her life that are still around. I don't need recognition for taking care of her at all because I wouldn't trade this time with her for anything, but I do think her other children and her grandchildren should at least visit or call every now and then. It seems to me that because she is "sick" that they don't want to be around her or feel as if she won't know whether or not they have been to visit or called...BUT I KNOW! Or maybe they think if they come around, we might ask for them to sit with her while we have some time away...which we wouldn't at this point anyway. My heart really hurts for her and the last thing I want is for her to feel like a burden or unloved by her family. I just wish they would make contact with her. I know it would make her happy, even if she didn't remember later on, at lease for that moment in time. Any suggestions, besides calling or texting them?...which at this time, would not be a good thing. I'm very angry with them right now.
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sclark1139
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Is there an event that you can invite them to celebrate - someones birthday, an exam passed, anything. Invite them to tea then contact them afterwards to tell them how much she enjoyed their visit and how she is still talking about how lovely it was to see them (even if she isn't really doing that). Maybe the penny might drop......
Just a thought; you might have to expend more energy trying to get those others to help you than you would by talking with your husband and a social worker to explore options for your mother's future care.
Your mums birthday is a great time to try and engage the others. Maybe by saying to them that it will help your mum by seeing all her family, as in my experience it helps with their wellbeing, as we did this for my granddad on his recent 90th. But also make sure you keep up with having your night off, as it's important you all get a bit of 'you' time. Happy birthday for your mum for next month!
A lot of people are scared of Dementia - it changes people and others aren't sure whether they can cope with that. I think inviting them for a celebration is a great idea and a perfect opportunity to educate them about Dementia - by seeing interactions and explaining to them about the 'feeling' that is remembered/appreciated it could ease their fear. Also to hear how you are involved and what you are doing could help, sharing your experiences and them being able to offer you some support might be a gentle introduction. Most of all I think communication is key for all involved. Good luck!
You do understand!! Thank you for your reply. I feel exactly the same way. I don't want them to do anything, I just want them to care or at least act like they do. It's heartbreaking to know that she did so much for all of us and not all of us are willing to return the care. Makes me sad and angry.
Thank you lharris! I know that Dementia can be a scary thing, trust me. However, I also know that it must be terrifying to be the one with the disease and not be able to control things that they once were able to control. My mom was a very independent woman. My father passed away 20 years ago and she has been alone and independent since that time. This is hardest on her, not on us. We can never imagine what must go through her mind when things are so confusing. She struggles at times with her memory loss and other things but having family around helps her forget that she forgets. I know that one of my brothers is in denial and thinks she will get better with time and he laughs at her forgetfulness, which infuriates my husband and other brothers. I think it's just his way of coping but it does appear childish and rude. I think he just doesn't have any idea how to deal with our mother being ill. And as the disease has progressed, he hasn't dealt with it very well at all. I know they all stay away because on some level they don't want to face it and don't want to see her that way. I struggle with knowing some day she might not know me but it is what it is, and right now, I'm just going to take care of her and love her. That's all I can do.
Oh WOW! I'm so sorry that you lost your mom. I know that day will come but it's so hard to imagine life without her, no matter her frame of mind. And, that's exactly what my brothers say to me..."leave her, she will be fine" Right now, we do leave her a little while every day. She stays home while we both work full-time, BUT, she sleeps until noon or whenever we arrive for lunch, 12-ish and we leave at 1:00 to return to work. Then she stays alone, awake, until my daughter gets home from school around 3:45. I know that right now we are managing and she is doing great for that short period of time. But some day, hopefully a long time from now because I absolutely love my job, I know she will no longer be able to stay any length of time alone. Then, I will quit my job and care for her full-time just as I know she did for me while we were growing up. My husband and I woke up around 6am last Saturday and spent some time going to yard sales and getting breakfast and came home about noon. My daughter and my mother were still fast asleep when we returned. BUT, that's the only time he and I have had alone since the move. It was nice!
Today, I have an overwhelming feeling of guilt. We have been planning our annual vacation for this coming summer and of course the discussion happened in front of my mother. I feel so bad for her to hear the plans we are making and that we need a break from caring for her. I feel as though we should include her and take her with us but I know that's not taking a real break or vacation or that it would be good for her to travel a long way. I just feel bad because I'm excluding her and making plans for my oldest brother to come stay with her for a week while we are gone. I just feel guilty, like I'm not supposed to have a life outside of taking care of her. Why can't I shake this horrible feeling of leaving her out and leaving her behind like I'm pushing her to the side so we can enjoy life while she sits and basically fades away even further from us? Oh, I just want to cry!
It feels like your reading my mind. The guilt over the smallest thing can be really crippling. But you must remember that if you burn yourself out, how can you then do what your doing?. So brilliantly i might add. The fact the guilt is there is a testement of how much you care.
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Caring for husband with dementia
Caring for 90 year old mother
Mum doesn’t sleep
Ranting and raving (Apologies for the few choice words)
