new development

[MrsChristmas]

Hi there

I hope everyone is okay.

When I last posted about my Mother it was about social care/GP going to visit Mum, who has un - diagnosed dementia, this was about a month ago, after I found Mum wandering around, dazed and confused one Sunday morning. She lives on her own, 94 and refused care.

I have not heard back from Mum's GP/social care and I have not seem mum for over a month, since I am working very long hours but, I do live next door and so able to see lights go on and off so it's a clue that Mum is functioning. I have not spoken to my brother for some while so it's all gone quiet.

I have three grown up children and only one lives nearby - aged 26. My daughter is very, very fragile, coping with depression and a reliance on alcohol. I see her as much as I can, even more now that she's given up her job to go back to Uni. My daughter has met a lovely man and I am pleased to say that, at last, my daughter seems happy. She sees a therapist weekly.

As I hadn't seen Mum or my daughter for a while due to my work, I decided to invite them both for dinner, I now wish I hadn't.

Mum has met my daughter's new boyfriend and, the first thing he said to her was that he didn't know that my mum had dementia, which shocked my daughter. I have been saying for years that this is what her grandmother has but no-one seems to believe me in my family.

My daughter visited my mum and was gone for ages and dinner was ruined. I wandered around to mum's house (bearing in mind that I'd not seen mum since social care had visited) and she was very hostile towards me when she saw me. The scene that greeted me was normal to me but, to an outsider - bizarre. Both of them were running around like mad people trying to find mum's handbag (the one lost a month ago when Mum was wandering). I suggested that we go back home to mine to have dinner and look for the handbag later...a diversionary tactic I use a lot now.

Dinner was okay and we had a nice time and my daughter decided to take mum back to her home. Again, they were gone for ages so I wander around (after clearing up) and again, both them ransacking the house for the handbag...mum in the garage at 11 pm going through bin bags and my daughter going through the house, getting more fraught and unstable...

My daughter said to me that it was awful that her grandmother had food rotting in the fridge from April, that there were cobwebs every where and rubbish piled up the kitchen and garage. She demanded to know who was looking after her grandmother?

Then my mum starting crying saying that she didn't want to go into a'home', that she was frightened, that she had no money..... My daughter picked up two ten pound notes that my brother had sent to mum with disgust. Mum saying she didn't know where her cheque book was. It was awful.

I tried to placate my daughter and my mother by saying that mum wasn't going anywhere and that we wanted her to stay her home but with help...my daughter kept interjecting trying to stop my mum crying. I tried to explain to my mum that I work long hours and cannot be around to help her which she just could not accept. I told her that I work weekends, evenings until 10 pm and usually just go straight to bed as I am exhausted. Mum said that I could go around to help when I got in at work at 10 pm..

The problem is that my brother and me have been running things between us and have agreed that mum should not have a new cheque book or credit cards because mum had paid £150.00 to a man to do a bit of gardening. Now my daughter is disgusted with me and thinks I am to blame to neglecting my mum.

We left mum and went back to mine where my daughter started laying into me telling me that I should look after her grandmother, that it's not right that I go out to work running my business and that I should do more to help her. It's easier for me as I live next door I was told. I tried to point out that I'd helped her grandmother for over years but had come to the end of my tether.

My daughter told me that the a woman came to see Mum a few weeks ago and Mum told this poor woman to 'p++s off' which my daughter thought was funny, I can't say I saw the funny side of it. My daughter has now promised my mum that she will call in three times a week to help her. My daughter doesn't drive, doesn't have a car, doesn't work and would have to get two buses to get to her grandmother's house.

Apparently this is all my fault because everyone thinks it's my role to look out for my elderly parent just because I live the closest. My parent has refused care, in middle stages of dementia, vulnerable.

I feel this is not fair on my daughter who, at 26 is now building her future by going to University. She has a new relationship and the world at her feet. She is now talking about not going to University and spending time with her grandmother to help her and no-one else is doing anything. My daughter put's the blame squarely on my shoulders and is very angry with me.

I know that I have no say about my mother and my daughter's decisions but it seems I have no say about my decisions to want to work to earn money to make my life better.

To an outsider it does look awful that a frail old lady has been left, apparently neglected, frail, lonely. It is very sad but, at the end of the day, it is my mother's decision. My brother and I have sadly and reluctantly accepted this and are now just waiting for the crisis....

I just hope my daughter takes this great opportunity to make her life better and not let her selfish grandmother use her life up because my mum just wants her own way.

 

[Sirena]

Realistically, it sounds as if someone does need to help your mother. Presumably SS deem her to have capacity, so they won't force care upon her. I can understand why you don't want to take it on yourself, but that means someone else will need to. Possibly when your daughter becomes more involved she will understand the longer term difficulties and that will be a catalyst for SS becoming more involved and your mother getting professional help.

 

[Rach1985]

Unfortunately your mum isn’t being selfish, this is her dementia making these choices. It is a lesson I am learning with my father. Everything revolves around him now and he can’t see that he is doing that. My mum went out for four hours yesterday to visit her sisters. He didn’t speak to her all day because of it.

Your mum definitely needs some home help. Speak to her gp and your local council and find out what support you can all get

Also someone posted this to me and it really helped in trying to understand my dads behaviour and how I handle things

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

We also had a similar situation where people thought me and my mum were exaggerating what was happening with my dad. Not being believed was so difficult that when we got a diagnosis it was in some ways a relief because people do now understand we aren’t exaggerating. I can’t imagine how hard it is for you to have a diagnosis and still not have people listen or believe. Make sure you’re looking after yourself and getting any help you need. And maybe like @Sirena said maybe with your daughter seeing it more often now she will understand more now and hopefully your mum will get the care she needs

 

[Rosalind297]

Your mother does seem to be displaying the behaviors of a PWD, one of which is denial of the condition, so it is hardly surprising that she has refused help. In order to get a concrete diagnosis, could you speak to her GP and ask him to refer her for an MRI? This would determine once and for all the condition of her brain and, depending on the areas of the brain that are damaged, what type of Dementia she has. Of course someone would need to ensure that she attends as it is can be a scary experience (I have had one on my brain so I know).

If this isn’t possible then the very least that you need to have is the outcome from the GP/SS visit. Does the surgery have you down as contact? If not, Maybe they have attempted to contact your mother with the report without success? Could you make an appointment to discuss the report/next steps and use it as an opportunity to discuss an MRI?

If you and your brother are unable or unwilling to take responsibility for your mother in her vulnerable condition (I assure you I know how difficult and stressful it is and know it’s not for everybody) SOMEONE has to take some decisions on a solution for your mother as she almost certainly isn’t able to make them for herself and it’s only going to get worse. I agree that your daughter is probably not the best person as she sounds too emotionally involved to consider potential options (such as care) dispassionately enough. I can’t suggest who this should be for obvious reasons. What I do know is that you care enough to have come to this forum more than once for advice and support so perhaps a serious and intensive summit with your brother to put a plan of action together would be the next step - it might be hard work in the short term but would give medium and long term security and peace of mind.

Good luck.

 

[MrsChristmas]

Your mother does seem to be displaying the behaviors of a PWD, one of which is denial of the condition, so it is hardly surprising that she has refused help. In order to get a concrete diagnosis, could you speak to her GP and ask him to refer her for an MRI? This would determine once and for all the condition of her brain and, depending on the areas of the brain that are damaged, what type of Dementia she has. Of course someone would need to ensure that she attends as it is can be a scary experience (I have had one on my brain so I know).

If this isn’t possible then the very least that you need to have is the outcome from the GP/SS visit. Does the surgery have you down as contact? If not, Maybe they have attempted to contact your mother with the report without success? Could you make an appointment to discuss the report/next steps and use it as an opportunity to discuss an MRI?

If you and your brother are unable or unwilling to take responsibility for your mother in her vulnerable condition (I assure you I know how difficult and stressful it is and know it’s not for everybody) SOMEONE has to take some decisions on a solution for your mother as she almost certainly isn’t able to make them for herself and it’s only going to get worse. I agree that your daughter is probably not the best person as she sounds too emotionally involved to consider potential options (such as care) dispassionately enough. I can’t suggest who this should be for obvious reasons. What I do know is that you care enough to have come to this forum more than once for advice and support so perhaps a serious and intensive summit with your brother to put a plan of action together would be the next step - it might be hard work in the short term but would give medium and long term security and peace of mind.

Good luck.

 

[MrsChristmas]

Hello everyone

Thank you for your advice, kindness and support.

Mum did have an MRI scan at the memory clinic in 2015 but I wasn't given the results because Mum didn't want me involved although the doctor did tell me that mum had very mild dementia.

Yes, the surgery does have my contact details but I have not heard from them, as yet.

My brother lives a 100 miles and visits Mum every three months and does various bits of housework for her, as well as run her home from his home. I don't think he will do anymore than that I'm afraid. He says that if there was an emergency he could be here within two hours.

We had several chats with Mum over the last few years voicing our concerns, persuading her to consider a home help but she refuses. The last time we spoke to Mum was a couple of months ago and all she would say is that she 'will think about it'.

My brother comes from the standpoint that he will not go against Mum's wishes and says that, unless or until she collapses or there is is an incident there is little we can do. Basically we play the waiting game.

As I have said previously, I have been the first port of call when anything has gone wrong because I am the nearest one. I live on my own with no partner to help me or family around, other than my daughter who has her own problems. This has been my role since my father passed away in 2012. It got to the point where I was running two homes with no life of my own.

For my sanity I had to find another outlet and my business was born. I get to meet lots of people and earn money doing something that I love. I made the decision to put myself first for the first time in 40 years, having been a single parent for many years.

I love my Mum very much but I just cannot 'sleepwalk' into being her carer. If she had had a physical problem I would have happily helped her but her dementia is extremely challenging and draining and both my brother and me find it very, very hard to cope with her.

I will contact the GP tomorrow as well as Social Care which I have done many times in the past. Each time I hope that 'something' will be done but generally I either get a phone saying that there is nothing social care can do and that Mum is a 'very determined lady' or - nothing.

I know it seems that my brother and me can't look after Mum but at 64 and 70 I think we are just both tired of it all and want it to end. We do our best but it is not enough.

You are right someone has to take control of the situation but who? I can do no more that speak to my brother (he knows), speak to social care or speak to the GP which I have done.

I agree that my daughter is not the right person and my natural reaction as her mother is to protect her.

Mum is deteriorating slowly. She can barely walk and has to be supported now. She deaf with very poor eyesight. She talks about going into town, going away for weekends..all sorts of fantasies. Since the wandering incident a month ago she has not left her home, other for her meal with me last night. She cannot see the dates on the food in her fridge so that is why it rots. She is totally reliant on what me and my brother do for her and spends weeks without seeing a soul. The only time she goes out is if I take her.

I will suggest the MRI scan to the GP but I am not sure Mum will agree to go this time.

Mum has made it clear on her medical records that she does not want me involved in her health care and I think it is unlikely that she will agree to me going with her this time for a scan. The only other person that could do it is my brother would he drive a 200 mile round trip to take Mum for a scan...I really don't know.

I know I'm being negative but this has been going on for years and it always ends going nowhere because Mum is in control and it will take someone to take the decision to push outside help onto her...

 

[canary]

I should imagine that the events around the dinner has opened your daughters eyes to the fact that her grandmother does indeed have a problem and it has come as a terrific shock to her, so now she is (unfairly) blaming you.

No-one can be forced to care for someone else, so please ignore what your daughter is saying about it being up to you and you should give up your work to look after her - your daughters emotions are running away with her.

I would get back to Social Services and find out what is happening and I would also contact your mums GP to let them know about her behaviour and your concerns. Unfortunately, I can relate to the way that people with dementia are unable to understand that they need someone to look after them and will often refuse care. If your daughter wont listen to your explanations then IMO she may have to learn about dementia the hard way.

 

[Rach1985]

@MrsChristmas you have done your best to convince your brother and your daughter that your mum needs extra care. Try social services and the gp and know that you have them done what is in your power to help
Your brother won’t go against your mums wishes, and you say he keeps referring to an incident happening for him to change his mind, then unfortunately it might sound harsh but let him live with the guilt because you have done everything you can to convince him and your mum. You can’t keep putting everything on yourself
Also regarding your daughter you said she is 26, again it mind sound harsh and I understand you want to protect her, but she is an adult. I agree with @canary that maybe it is time she learnt the hard way about dementia

 

[Sirena]

I completely understand why you don't want to look after your mother. I would feel exactly the same - actually I *do* feel exactly the same. The problem is that because you live next door to her, your family and SS expect you to be the first port of call and have 'left it to you'. I used to live near my mother but moved away 12 years ago - partly to avoid being a convenient carer.

Because your mother has instructed the GP not to talk to you, you will presumably not be informed of outcomes. I don't think the GP will organise an MRI, he will refer your mother to the memory clinic, they will re-test her and arrange an MRI (that is how it worked for my mother anyway). From what you have said it is very unlikely she will agree to go to these appointments. I think you should keep your daughter fully informed of all you are doing with SS and the GP, and see if she can persuade your mother to co-operate. She may then begin to understand the difficulties you have had over the years.