It's been a year since I posted and a year since mum's diagnosis and 17 months since my Dad died (her husband of 69 years). It's been difficult and there have been many challenges which I feel we have found solutions for such as buying a memory clock so mum can see the date, day, time month and year at a glance. Writing a weekly menu and putting it on the fridge freezer to remind her she does have food and what to eat each day and (the easy one) buying a pill box with am and pm lids for her memory tablet. My brothers and I take it in turns to take mum out each Saturday to do her weekly shop with her and get her out of the house - which doesn't seem much but I have encouraged her to go to a lunch club - arranging transport, booking the meal and on one occasion taking her and staying with her myself, but she flatly refused to go again and doesn't want to talk to 'strangers'. She has almost no short term memory and the long term memory has been disappearing over the last few months and she is getting the past muddled up. She has more difficulty in getting her words out some days and has difficulty putting saying what she means. She feels scared living alone but flatly refuses to live in a retirement apartment or an Extra Care Scheme where she would be safe and have neighbours of a similar age (she is 87 nearly 88). I live thirty minutes drive away from my mother as does one of my brothers and the other lives an hour and a half away - so it is not just a case of popping round the corner to see her. We have partners and work commitments too but we do phone and visit when we can. We take her to the doctors/hospital when needed but increasingly the time we spend with mum is very negative and frustrating. She is not patient and has no concept of time when waiting for something and phones and leaves lots of messages on our answerphones even when we are at work or out somewhere and each message becomes more terse to the point when she says we are useless children. We have suggested lots of solutions for moving, having help around the home, a gardener, a bereavement service or befriending service but nothing we suggest meets with approval everything is negative and she misses Dad so much and says we don't understand but we do. I find myself being manipulated into doing things by mum which I have not planned for which annoys me and she just disagrees with everything I say and moans constantly to the point that it is extremely depressing spending time with her or listening to the many voice messages on the answerphone. I fee upset and angry with myself that she can so easily wind me up and tell me that we're not useful when we are doing all that we can to support her. This situation is getting too much for me as I am constantly feeling guilty whereas my brothers seem to have a way of tuning out and letting it wash over them. How do others cope with these feelings?
A year on
- Thread starter Greens
- Start date
With difficulty @Greens.
I found when my mother had dementia and was living alone she had no idea of how I was living my life, working full time and running a home. She also had no concept of time so thought every hour was a week.
We lived a five minute drive and went to check on her mornings and evenings before and after work. We shopped for her at the weekend and took her washing for a service wash. The more we did the more she took for granted so I`m afraid we had to make ourselves less readily available.
I can only suggest you ignore the phone messages and step back a little. Without your frequent attention, your mother may become a little more open to outside help.
It won`t be easy I know but you are the only one who can affect a change. Your mother will continue with her dependent behaviours for as long as she is allowed to.
Forget the guilt. You are doing as much as you can and the demands of some people with dementia who are living alone are often off the scale, even though they cannot be held responsible.
I could have written a lot of this myself so just replied to sympathise really and say I understand . My Mum passed away 8 months ago leaving my Dad who was diagnosed shortly after (already at mild/moderate by then). I'm an only child and live 150 miles away. Mum pampered him/ waited on him hand foot and finger all their married life so he's struggling significantly living alone . Plus they never did any maintenance to the house so things are always going wrong. I've got three kids & a husband with a very demanding job.
So it's been a nightmare - Ive discovered that with Alzheimer's Dads life has narrowed so all he can think about is him - he has no awareness or understanding that my life can't revolve entirely around him! I've had days where I've nearly had a breakdown when I've had a call every half an hour about the heating - the radiators are too hot - too cold - they are still on - they've gone off - etc etc etc . And I get calls everyday about strange noises in the house. I've constantly felt guilt - guilt I'm not there enough or guilt that I'm spending too many weekends visiting him and not with my kids.
The conclusion I've come to is that I can only do my best - this Alzheimer's is like a sponge, it soaks up every bit of attention & time you give it and then it just wants more ! I will never be able to do enough to make Dad happy and I can't do the one thing he really needs & wants , bring back my Mum or be her replacement. It hasn't completely taken the guilt off my shoulder but it's helped. I'll always do my absolute best for him but my children have to be my priority while they are young and I'm not feeling guilty for that anymore.
Our solution is that Dad will need to be in a residential home before too long - for all our sakes.
So it's been a nightmare - Ive discovered that with Alzheimer's Dads life has narrowed so all he can think about is him - he has no awareness or understanding that my life can't revolve entirely around him! I've had days where I've nearly had a breakdown when I've had a call every half an hour about the heating - the radiators are too hot - too cold - they are still on - they've gone off - etc etc etc . And I get calls everyday about strange noises in the house. I've constantly felt guilt - guilt I'm not there enough or guilt that I'm spending too many weekends visiting him and not with my kids.
The conclusion I've come to is that I can only do my best - this Alzheimer's is like a sponge, it soaks up every bit of attention & time you give it and then it just wants more ! I will never be able to do enough to make Dad happy and I can't do the one thing he really needs & wants , bring back my Mum or be her replacement. It hasn't completely taken the guilt off my shoulder but it's helped. I'll always do my absolute best for him but my children have to be my priority while they are young and I'm not feeling guilty for that anymore.
Our solution is that Dad will need to be in a residential home before too long - for all our sakes.
Thank you so much for your response and advice it is really appreciated. Tonight it was a pleasant phone call asking me how she heats her fish pie and I talked her through putting it in the microwave - it was reassuring to know she was in fact going to have a meal, and then five minutes later she phoned and said she had lost what she was cooking and had that ever happened to me? I chuckled and said no, but if she opened the door to the microwave she would find her fish pie in it. It is heartbreaking that this is such a terrible disease and has such a devastating effect on the sufferer and those close to them.
Your reply is appreciated more than you realise as we get lots of phone calls about no hot water, the boiler not working etc and yet the barometer shows it is 78 degrees and mum walks round fully clothed with a coat on and says she is freezing cold. Yes, your children need to be your priority and you shouldn't feel guilty about that. My mum wants to be with Dad or as you say,bring him back, which is understandable as they spent 70 years together. I think your conclusion that Alzheimer's is a sponge is spot on, it is all consuming for Mum and for us.
I agree with GrannieG that it would be best to step back, if you can. However much you do, it won't be enough. Even if you practically lived there, she'd complain if you left for an hour. It's the nature of the disease, she will have no concept of how much time you spend on her, and people with dementia lose empathy with others early in the process.
You say that you suggest various things to her (types of help etc) and she refuses. That is inevitable - her default position is always going to be 'no', she will only want help from you, not from 'outsiders'. She can no longer make a coherent decision so you will have have to arrange it and present it to her as done, no arguments. If you want her to accept e.g. a befriender, arrange it and don't discuss it beforehand. When my mother (also living alone, 2.5 hours away from me) got to this stage I arranged daily carers for her, and rang her the evening before to tell her they would be arriving at 9am. Fortunately she really clicked with the first carer they sent so it was a positive experience and she accepted it - there was no choice really as I certainly wasn't going to be popping round! (I never used the word 'carer', it was a nice lady who would help her carry the shopping etc.)
I had POA for my mother, so I could arrange and pay for care for her. I hope you/your siblings have POA for your mum?
You say that you suggest various things to her (types of help etc) and she refuses. That is inevitable - her default position is always going to be 'no', she will only want help from you, not from 'outsiders'. She can no longer make a coherent decision so you will have have to arrange it and present it to her as done, no arguments. If you want her to accept e.g. a befriender, arrange it and don't discuss it beforehand. When my mother (also living alone, 2.5 hours away from me) got to this stage I arranged daily carers for her, and rang her the evening before to tell her they would be arriving at 9am. Fortunately she really clicked with the first carer they sent so it was a positive experience and she accepted it - there was no choice really as I certainly wasn't going to be popping round! (I never used the word 'carer', it was a nice lady who would help her carry the shopping etc.)
I had POA for my mother, so I could arrange and pay for care for her. I hope you/your siblings have POA for your mum?
It’s the same with my OH I gave up my 4 day per week job as he was saying how lonely he is. But he still says he’s lonely and doesn’t want me to go anywhere. So no matter how much you do for them it is never enough!
We go our with a walking group and he doesn’t like me talking to people. I arrange outing that I know he will enjoy but it’s always a battle to get him to go, it’s such hard work I have a carer once a week but he doesn’t like her. I have to go in hospital soon and was hoping the carer was going to look after him and take him out but he says he doesn’t want her coming to the house anymore!
I’ve had to contact social care and they have said he will have to into respite. So I am arranging that.
We go our with a walking group and he doesn’t like me talking to people. I arrange outing that I know he will enjoy but it’s always a battle to get him to go, it’s such hard work I have a carer once a week but he doesn’t like her. I have to go in hospital soon and was hoping the carer was going to look after him and take him out but he says he doesn’t want her coming to the house anymore!
I’ve had to contact social care and they have said he will have to into respite. So I am arranging that.