Hi, I decided to post today as I have visited my mum this morning and am extremely worried about her and don't know what to do for the best. She's 89 years old, was diagnosed with Alzheimers in June 2021 and the problem relates to my late dad, who passed away in February 2019. Mum was physically and mentally abused, bullied and controlled by dad during all their time together and before he died he told mum that after he was gone he was going to come back and haunt her. Three years on and we are in the situation where she truly believes he's in their apartment, telling her what she can and cannot do. She has photographs of him everywhere, including under her pillow, opposite the bed, next to her chair, strapped to the telephone etc, etc, etc. I have tried encouraging her to remove some of these and perhaps have just one photograph of them together on display, but she refuses, or if I help remove the pictures they are back in the same place the next time I visit. When I saw her today she told me she hasn't slept properly or watched anything she wants to see on the TV for two weeks as Dad has been wanting to watch football, rugby and snooker. She leaves the TV on for him day and night and believes that he turns the TV off in the night. My explanation of the TV turning itself off just cannot be accepted or understood by her. I have carers to look after mum's medications twice daily - the carer last night was a male and I saw from the notes that she dismissed him early. When I asked her about it, she said that Dad was very angry that she had another man in the apartment, and that she didn't want him losing his temper with her again and go through what he used to do to her for all those years. She isn't eating or drinking properly because most of the time she falls asleep in the chair during the day and really doesn't have much of an appetite. I have spoken to our GP and the consultant at the memory clinic, but everyone agrees that no amount counselling or therapy would help as she doesn't have the mental capacity to undertake this. I am the youngest and only girl in my family with three older brothers, none of whom are involved in any way with her care, so this all falls on my shoulders. Has anyone else experienced anything similar with their loved one? I constantly try to explain that Dad really isn't there and this morning I promised her that if she goes to bed when she wants to, goes out or wears something he would disapprove of, absolutely nothing will happen to her. It's so sad ... I don't know what to do but hate the thought that she is sat there alone and feeling frightened. Any advice or comments would be very gratefully received.... thank you for listening.
Mum believes my dad is still alive
- Thread starter Chrissie61
- Start date
Hello @Chrissie61 and welcome to Talking Point.
Unfortunately, many people with dementia forget that their spouses have died and think that they are still alive - my mum was one and she thought that the reason that he wasnt around was because he had left her for another woman. It is unusual for them to think that they are still living in the home, and Im wondering whether you are on to something about the photos. It is very common for people with dementia to think that photos are real - that it is an actual person who they think is really talking to them. Could you take her out of the house, maybe for lunch somewhere (dont plan it in advance in case "her husband" says she cant) or for somewhere she "needs" to be and then while she is out, get someone else to remove all the photos of her husband and take them completely away from the house where she cant find them. Dont say anything about it and see whether this will stop the delusion.
Unfortunately, many people with dementia forget that their spouses have died and think that they are still alive - my mum was one and she thought that the reason that he wasnt around was because he had left her for another woman. It is unusual for them to think that they are still living in the home, and Im wondering whether you are on to something about the photos. It is very common for people with dementia to think that photos are real - that it is an actual person who they think is really talking to them. Could you take her out of the house, maybe for lunch somewhere (dont plan it in advance in case "her husband" says she cant) or for somewhere she "needs" to be and then while she is out, get someone else to remove all the photos of her husband and take them completely away from the house where she cant find them. Dont say anything about it and see whether this will stop the delusion.
Mum is actually OK if I take her out as she thinks that Dad will find it acceptable to be out with me, but she wants to leave the TV on so that he isn't lonely and asks me to say goodbye to him as we leave. I'm really struggling with it all and don't know what to do for the best. Thank you for your suggestion about removal of the photographs though - that could well be something worth trying - but every single day she gets out all her photographs and goes through them, looking at pictures of dad. It's strange really, given how awful he was to her sometimes. Mum also wants to keep telling me about the numerous affairs my dad had during their marriage, including naming names, which is quite distressing as some are people I know or have known. This has only happened since Dad died, but I guess she was terrified to tell me when he was alive in case she got in trouble from him.
My mum thinks her parents and aunts (my great aunts) are still alive -best to just go along with it by experence and in not creating an emotional nighmare for the PWD
I totally agree with you Palerider about going along with mum and not challenging her. However, its the effects is having on her which are causing me so much worry - not eating, absolutely exhausted through lack of sleep, not socialising or going out, and most importantly her fear of dad, which is very, very real. The terror in her eyes today was so upsetting to see, bless her.
I know, I am the same with my mum as I have written on countless other threads she does not eat like she used to but these are not just the effects of one thing, these are the effects of what the disease does to someone and there is nothing you can do -thats the reality. I wish I could offer you more, but all you can do is be there for her and if you feel she is having bad hallucinations then that is a reason to get her GP involved and consider some type of medication unless you have done that already, if you haven't its worth a try, but if this is how your mum is suffering then that needs to be addressed.
My Mum suffered massively from anxiety, and inconsolable crying. She was prescribed Mirtazipine, an antidepressant, that also helps with sleeping. It wasn't a miraclle cure, but it did help enormously. Her GP should be able to prescribe this, or something similar. Certainly worth trying.
Hi @Chrissie61 I agree with @lollyc its worth discussing agin with her GP. My mum was flipping between extreme anger and anxiety and not sleeping - getting up 4 am and insisting 90 year old dad got up too to help her shower. She has been on mirtazepine 4 weeks now - her anxiety is hugely reduced and she's actually getting up a more reasonable 7am.
Hi @Chrissie61 your post could have been me posting this! My mum is 84 diagnosed in 2016. My stepfather passed away in January 2021 and although he wasn’t nasty to her or anything, she tells me he’s away for a walk or he didn’t come home last night and she waited up until early hours, blames him for leaving fire on (fire no longer in operation as it’s gas). I just go along with things saying it’s a nice day for a walk. She looks exhausted everyday and I think it’s due to her being up all night. She seems to sleep a lot during the day and is aware something going on with her memory but not quite sure what. I visit everyday after work for around 2 hours and she tells me my brother has taken her out shopping, this is all in her head as I too am the youngest only girl with 2 older brothers (3rd brother sadly passed away in January this year). One brother hasn’t seen her for around 5 years and the other one visits for half an hour maybe once a month. The guilt I feel when I leave her is awful as she looks sad and confused. ?
That medicine has helped my dad too. I was getting reports of him being in tears before he started on it, but that's now rare.
it was the same with my mum ,mum and dad married 69ys , loved each other dearly but when dad died mum hardly mentioned dad and when she did it was to say he was out drinking/ playing darts - mum looked so sad and angry at the same time as if she was cross with dad and didn,t want his name mentioned- he would have been so hurt had he known - mum was hurting inside and i couldn,t ease it at all- so sorry you are going through thisx
Sometimes a dream can be so very real, i have woken then it has taken a while to awaken to reality. Grief is complex, don't look ahead to much.
After a long relationship so much of two is entwined into one. Make sure you Mum is part of natural conversations, this helps the grieving process. Memories can bring smiles as well as tears, a year is not very long. We all grieve in different ways.
Take care of yourself, so many worries about the future never happen, enjoy the day, one day at a time.
Sounds very difficult for you. You say,
"Mum also wants to keep telling me about the numerous affairs my dad had during their marriage, including naming names, which is quite distressing as some are people I know or have known. This has only happened since Dad died, but I guess she was terrified to tell me when he was alive in case she got in trouble from him".
So although she remains 'afraid' of your dad and fears what he might 'do' now, she will still tell you about these things now? Perhaps getting her to talk more of these things, very uncomfortable for you, I appreciate, and her seeing that there is no consequence from your dad, might make mum less fearful of other things she imagines your dad would object to? If you could somehow broaden the conversation away from 'affairs', to, for example, the fact that men are care workers and come into people's home to do care work, or perhaps clear one photo away, replace it with flowers, or a photo of you, or you and her together, if she saw that similar to her discussing your dad's affairs with you, there were no consequences for her, that might give you both some relief that could be built on.
"Mum also wants to keep telling me about the numerous affairs my dad had during their marriage, including naming names, which is quite distressing as some are people I know or have known. This has only happened since Dad died, but I guess she was terrified to tell me when he was alive in case she got in trouble from him".
So although she remains 'afraid' of your dad and fears what he might 'do' now, she will still tell you about these things now? Perhaps getting her to talk more of these things, very uncomfortable for you, I appreciate, and her seeing that there is no consequence from your dad, might make mum less fearful of other things she imagines your dad would object to? If you could somehow broaden the conversation away from 'affairs', to, for example, the fact that men are care workers and come into people's home to do care work, or perhaps clear one photo away, replace it with flowers, or a photo of you, or you and her together, if she saw that similar to her discussing your dad's affairs with you, there were no consequences for her, that might give you both some relief that could be built on.
Whilst I obviously don't know whether your father did or didn't have affairs, I would say take everything with a large pinch of salt, unless you really know this to be true.
My mother was utterly convinced that my father had pushed her down the stairs and caused her broken hip. She told everyone this, and the doctor at the hospital believed it. Except.... Dad was 200 miles away at the time. She could not be persuaded that her view of events wasn't true. For many months she talked about our 3rd sibling - but there are only 2 of us. She also told the (same) doctor that she had lost a baby (doctor also believed it). In fact it was a very good friend whose young son had died.
Dementia can fragment memories, mix them up with something seen on TV, or read in a magazine, and produce a brand new "memory", that for some reason sticks as being a reality.
My mother was utterly convinced that my father had pushed her down the stairs and caused her broken hip. She told everyone this, and the doctor at the hospital believed it. Except.... Dad was 200 miles away at the time. She could not be persuaded that her view of events wasn't true. For many months she talked about our 3rd sibling - but there are only 2 of us. She also told the (same) doctor that she had lost a baby (doctor also believed it). In fact it was a very good friend whose young son had died.
Dementia can fragment memories, mix them up with something seen on TV, or read in a magazine, and produce a brand new "memory", that for some reason sticks as being a reality.
Can you remove the photos gradually? I assume she does not remember short-term conversations or you could perhaps say your dad is going away for work or living with you? Something that removes him from the house but is not unpleasant? Telling her you understand and that you are always nearby so that she can always call you if he is a problem - can there be a TV in a room that is 'dad's room and she can have her own TV? Sounds like she has not felt safe for much of her life and as that is now where her brain is living it's very hard. I think it would be great for you to discuss her and how to handle her with the Admiral Nurses, and make sure you get lots of support for you as it will be taking a huge emotional toll on you xxx my mum had a dementia-friendly phone, shaped like an old fashioned one that dialed me as soon as she picked it up, she picked it up often and I felt it meant I was always with her and I think she felt that too.
There is a need for dementia charities to educate the healthcare workers from the most junior to the most exalted not to believe what dementia patients tell them unless confirmed. Regulars in this forum have read many tales of misdiagnosis or poor care arising from fiction being accepted as true. My own very insignificant example was my dad telling a nurse he walked a mile most days. She put that in the notes. It wasn't true but might give a doctor an incorrect background history. In the interests of patients we should be saying D for Dementia, D for don't believe all you are told.
My neighbour told the medics who did a phone diagnosis that she walked her dog Alfie in the forest every day. A couple of years earlier she had done that but Alfie was now so decrepit he could hardly walk to the end of the road!
Thank you all so much for your helpful suggestions and comments. I’ve been with mum today and quite honestly I’m at the point I don’t know how much longer I can carry on looking after her. Mum’s sister and friend visited today and she told them all about dad sitting in the room, etc etc. However, as she always does when people visit, she tells them she wants to buy things but I won’t let her. She has also told this to family members (none of whom are involved in her care), one of whom sent me the most awful message last year saying I wasn’t the right person to look after mum!!! The bottom line is that by the time Ive paid her care bills of £1600 per month, bought her food, incontinence products, paid all her bills etc, there’s very little disposal income left unless I start dipping into her savings. She also asks me to get her £100 a week cash, which she fritters away (apart from £20 getting her hair done each week). She buys stuff like toilet roll stands, picture hanging kits and clothes from New Look suitable for teenagers. I’m honestly getting to my limit of being able to deal with her demands on a daily basis … it’s just relentless. I took mum out for lunch with her sister and friend, then came home, cried & fell asleep, upset and mentally exhausted. Sorry for the very long post - I needed to vent!
Sadly people do reach a point where someone else has to manage their money. £100 a week is probably much too much for small things. I might invite the critical family member to take over for a week. Any family member complaining that you don't allow her to spend her money should a) be sent the accounts to read B) be asked to contribute a monthly sum.
