My mother keeps repeating herself. She keeps asking me the same questions. Sometimes the questions are things she already knows the answers to. It gets worse at night. I know she has dementia and her brain doesn't work like it used to but what the hell. I'm at my wits end. I'm looking at caregivers in my area. I'm really trying to come to terms with the fact that she's no longer that same person who raised me. I try my best to keep my responses calm. I like to think I've been doing a bit better after calling up Alzheimer's organization. She was always on top of things. Now she just seems like a walking talking radio box. Her sentences don't make sense anymore. I'm doing everything I can to manage this situation to the extent that I can. I took away her car keys, got a power of attorney, she's on medication, we go out to lunch or dinner once a week so she's not stuck at home all day, Tile GPS trackers, you name it. There have been days where I have yelled at her then I feel guilty afterwards. She's a very nice woman to be around and I know logically she would absolutely hate this version of herself. I'm trying to take care of myself by taking things a little slower. I just needed to vent
I feel alone. I'm caring for my mother who has dementia
- Thread starter existingaspect
- Start date
I read the forum, don't usually write anything and I'm sure other more experienced forum partakers will come along soon but we feel your pain, we are all struggling with exactly what you are struggling with. We all get frustrated, angry, resentful and very very sad about what is happening to our loved ones and to us. And so much grief. I can't even think about it but I send you my best wishes from the other side of the world. (I'm in Australia)
Hi
It is incredibly hard to care for your loved one who is slowly changing and the roles become reversed. I think it feels like grieving but the person is still there. I look at Dad and I know he is Dad but he doesn't feel like Dad anymore. I haven't any big solutions but it is important to seek out help and support . Guilt is a big part of caring, I feel guilty every day that we couldn't look after Dad at home when he wants to go home and cannot see why he isn't there. He shouts but then forgets he has shouted at me and I am somewhat pleased he doesn't and I pretend that didn't hurt and it was and is fine. Share your thoughts and feelings on the forum if it helps, a lot of people read and don't post and some people post a little, some a lot but it is always as supportive place. Sending 💕 to you xx
over seven years in and the best help I discovered was the companionship of Memory Cafes and activities especially music. At home through Alexa we stream M4D radio and select the 1950s music and the memories flood back for both of us. I take her to local dementia musical groups and once a month dementia film showings at the Light cinema. Doesn’t stop the repeated questions etc but helps stimulate her brain and bring lots of smiles, the very best of luck 💕
Dementia does reach a stage where you need outside help, so I think getting carers in would be a very good idea. Perhaps you could also find someone who would sit with her, or take her out, each week to give you a break.
It’s tough going, try to take it a day (or an minute!) at a time. I am in a similar situation, my mother was diagnosed with Alzheimer’s 5 years ago, she has lived with me in her ‘granny flat’ for just over 3 years now. She is only in her early 70s and physically fit. The repetition loops and confusion are so hard to handle while trying to remain patient & kind, we are only human. Dementia day care at Age Uk has kept us both going, is there one your mother could join? Also a dementia digital calendar helped me in the earlier days, I use MyHomeHelper. How long has your mother had dementi?
Dear @existingaspect
after six years of caring for my mum with developing Dementia she died in early 2021. In her last year we were virtually house prisoners in social isolation and the repetitive questions was very tough to deal with. Let me stress I am not a saint. No one gives you a manual on how to deal with Dementia in a loved one. You only have to witness how some medical professionals “respond“ to the demands of Dementia, to realise there are no saints just loving people trying their best to stumble through the mists of Dementia, holding the hands of their loved one. None of the following suggestions are guaranteed to work, but in combination they might help you maintain a workable environment at least for some time period.
1) If you start to get stressed, your voice is beginning to go up, tension in your emotions, etc, these are not negatives in a caring role but warning signs. Take a break, leave the room, get some moments to refocus your mind. Step from the lounge into the kitchen to create a physical gap. Learn to create even more importantly a brief mental space for yourself to recharge. Think of your favourite flower, meal, place to visit, etc and go there in your mind. Not easy at first but with practice it gets better. As you distract your thoughts your mood will change. The human mind needs guiding, coaxing and can rarely fully engage on two thought paths at a time.
2) Use of memory clinics has been made by another person on this thread. Think about your mum when she was pre Dementia and much younger. You need to engage her longer term memory which is one of the last parts to be damaged. Did she enjoy card games? Would she settle and watch old films and TV programmes from years ago on Freeview? Love joy, As Time Goes By, etc, got me and mum through the lockdowns. I knew the scripts by half but my mum was content watching them. Mum could still read her Peoples Friend each week, I just had to turn the page when I could to stop getting the same article repeatedly read to me.
3) Like all carers you are in the process of crossing a bridge. Most likely at the hardest mid point. You mention your pre Dementia mum being a strong and capable person. Now for one the hardest parts of caring. Please retain your memories of that mum in your mind, but accept that lady is now gone. Your new mum may seem needy, anxious, ungrateful, etc, but that is the reality of the situation. Please accept that fact as soon as you can, finish the journey over the bridge. It is deeply unpleasant standing on the other bank, but doing so mentally will help you support your mum as she now is. That is a really tough emotional ask of any carer but it is the nature of the illness.
4) Please accept that you need a space to rant, let go of distressing emotions as they buildup,etc, in a safe way. Please come onto this forum and rant. No one will judge you. All the people here belong to the carers club. They did not ask to join, they would rather their loved one was well. That said they are very supportive, they wear the tee shirt, they get it. If ranting here is to personal go into the shed and kick seven bells out of an old puff. Get the emotional dross out. Anger at what has happened to your loved one, guilt you are somehow failing your mum, feelings of isolation, others you meet prattling on how they would cope having never dealt with Dementia, etc.
5) Lastly cut yourself some slack. You love your mum. You have not run for the hills. You have engaged with her illness as best you can, with no guidance manual. Always remember you are part of the solution not the problem. Be gentle with yourself. You will make mistakes but so do all carers in the absence of a effective training manual. But you know what this site is a gold mine of useful information and support. Please just reach out and ask questions, help, etc.
All carers facing Dementia are doomed to fail. The illness is remorseless, it takes no prisoners, it will suck the life force out of your loved one and anyone dealing with the situation as a carer. Please be clear on that point. On that basis think about how far down the caring role you can go? I was lucky. No partner or kids to think about, reasonable finances when I had to give up work, a deep love for my mum, physically fit and relatively young. Dementia care still almost broke me. Where are your lines in the sand? You will have to periodically reevaluate that point but most carers need external support, quite likely a care home ultimately for their loved one. Not a personal failing just fact In most cases.
I have tried to help. If at first my words cause upset please accept my apology but no offence or hurt was intended. We are all different, one of the miracles of life. I wish you well on your caring journey.
after six years of caring for my mum with developing Dementia she died in early 2021. In her last year we were virtually house prisoners in social isolation and the repetitive questions was very tough to deal with. Let me stress I am not a saint. No one gives you a manual on how to deal with Dementia in a loved one. You only have to witness how some medical professionals “respond“ to the demands of Dementia, to realise there are no saints just loving people trying their best to stumble through the mists of Dementia, holding the hands of their loved one. None of the following suggestions are guaranteed to work, but in combination they might help you maintain a workable environment at least for some time period.
1) If you start to get stressed, your voice is beginning to go up, tension in your emotions, etc, these are not negatives in a caring role but warning signs. Take a break, leave the room, get some moments to refocus your mind. Step from the lounge into the kitchen to create a physical gap. Learn to create even more importantly a brief mental space for yourself to recharge. Think of your favourite flower, meal, place to visit, etc and go there in your mind. Not easy at first but with practice it gets better. As you distract your thoughts your mood will change. The human mind needs guiding, coaxing and can rarely fully engage on two thought paths at a time.
2) Use of memory clinics has been made by another person on this thread. Think about your mum when she was pre Dementia and much younger. You need to engage her longer term memory which is one of the last parts to be damaged. Did she enjoy card games? Would she settle and watch old films and TV programmes from years ago on Freeview? Love joy, As Time Goes By, etc, got me and mum through the lockdowns. I knew the scripts by half but my mum was content watching them. Mum could still read her Peoples Friend each week, I just had to turn the page when I could to stop getting the same article repeatedly read to me.
3) Like all carers you are in the process of crossing a bridge. Most likely at the hardest mid point. You mention your pre Dementia mum being a strong and capable person. Now for one the hardest parts of caring. Please retain your memories of that mum in your mind, but accept that lady is now gone. Your new mum may seem needy, anxious, ungrateful, etc, but that is the reality of the situation. Please accept that fact as soon as you can, finish the journey over the bridge. It is deeply unpleasant standing on the other bank, but doing so mentally will help you support your mum as she now is. That is a really tough emotional ask of any carer but it is the nature of the illness.
4) Please accept that you need a space to rant, let go of distressing emotions as they buildup,etc, in a safe way. Please come onto this forum and rant. No one will judge you. All the people here belong to the carers club. They did not ask to join, they would rather their loved one was well. That said they are very supportive, they wear the tee shirt, they get it. If ranting here is to personal go into the shed and kick seven bells out of an old puff. Get the emotional dross out. Anger at what has happened to your loved one, guilt you are somehow failing your mum, feelings of isolation, others you meet prattling on how they would cope having never dealt with Dementia, etc.
5) Lastly cut yourself some slack. You love your mum. You have not run for the hills. You have engaged with her illness as best you can, with no guidance manual. Always remember you are part of the solution not the problem. Be gentle with yourself. You will make mistakes but so do all carers in the absence of a effective training manual. But you know what this site is a gold mine of useful information and support. Please just reach out and ask questions, help, etc.
All carers facing Dementia are doomed to fail. The illness is remorseless, it takes no prisoners, it will suck the life force out of your loved one and anyone dealing with the situation as a carer. Please be clear on that point. On that basis think about how far down the caring role you can go? I was lucky. No partner or kids to think about, reasonable finances when I had to give up work, a deep love for my mum, physically fit and relatively young. Dementia care still almost broke me. Where are your lines in the sand? You will have to periodically reevaluate that point but most carers need external support, quite likely a care home ultimately for their loved one. Not a personal failing just fact In most cases.
I have tried to help. If at first my words cause upset please accept my apology but no offence or hurt was intended. We are all different, one of the miracles of life. I wish you well on your caring journey.
Thanks to the person who said guilt is part of caring. Sometimes I've read the opposite on here - you shouldn't feel guilty. Well, if you care and feel responsibility, then it is something you will feel in my view. You say, existingaspect, something about it being worse at night. I'm guessing you are living with your Mum then? For us, the path to being involved with carers or external activities has not been a straightforward one and I found it hard and still do when people come up with them as 'solutions'. But things can change. Now I can take Mum to Singing for the Brain every week. A few years ago, she wouldn't stand for it. Bringing someone else into the house is still problematic for us.
I think you have got some really good advice here, better than I could give as I’m not with my Dad all day, every day. When I have been looking after him for long periods, I’ve found the repeating questions hard. I’ve tried to think about the intention rather than the words. Sometimes it’s an attempt to communicate or connect so I’ll answer briefly but then meander onto another topic. Sometimes it feels like a way of expressing anxiety so I’ll try to say something reassuring and move onto making a cup of tea or something. I found that my Dad seems to enjoy repetitive activities so got him going on some very restricted cleaning activities (like polishing a lamp) while I was doing other things. That kept him absorbed for a good bit of time. Maybe things like this could keep the questions down.
You’re not a saint (none of us are) so try to be forgiving towards yourself. It is wearing, there is not getting around it!
You’re not a saint (none of us are) so try to be forgiving towards yourself. It is wearing, there is not getting around it!
Thank you Whisperer for such an insightful post, which I’ve just read. The points you make are so very very relevant and in the caring effort need to be reiterated regularly So to that end I shall reread it often to assuage my guilt and feelings of being a reluctant carer.
I don’t post much but read lots, and can’t express more fully how this forum and its members are an absolute godsend!
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