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Partners children not being supportive

Terrtel

Registered User
Mar 22, 2017
6
0
Hello,
My partner, Val, was diagnosed in March 2016 with Vascular Dementia and in July 2016 with Early Onset Alzheimers. She was 49 on diagnosis.
We met with a local person from the Alzheimers Society in 2017 at Vals home, to just get some advice and find out any resources appropriate to her age group, if any.
Things have moved on a bit since then. Her son was at home with her but he has since moved into a home with his partner and now have a family. As Val was having moments of forgetfulness with food preparation and cooking, shopping and handling money, remembering to shut and lock doors and windows it was decided she would not be best living on her own.
Her daughter and family were in rented accommodation that wasn't the best, damp rooms and not the best of areas.
So after a conversation it was decided between them they would move into Vals home and in return for taking care of and supporting her needs where required they would live there 'rent free' (Val is a council tenant, they are aware her daughter has moved back for this reason)
Val moved into the smallest bedroom, gave hers up for her 3 grandsons to share and her daughter had the middle sized room with her husband.
For the most part things have been stable.
The Lockdown that happened after Christmas things seemed to have taken a dive.
The son in law was off work for a good while and he often doesn't seem tolerant of Vals situation, how she can be in pain and feel low, they do have some spats. But lately her daughter seems to not get Vals needs and understand the full complexity of her situation.
In my own opinion I have felt since her diagnosis her family just haven't grasped the full extent of Dementia. I'm sure they think she is just a bit forgetful. Her daughter feels she can help her with cooking food etc and walk for miles when they all go out on a trek. She can't. Val has lost the ability to time food cooking to coincide all at once and has a weakness down her right side plus arthritis in both hips. She did have a perching stool in the kitchen to help her do tasks while off her joints, but that got thrown out by her daughter! I know this and they should, but they seem to think she is 'just being miserable' .
She has a TV in her room and has always loved the soaps. She has a routine in evenings which tie in with watching these shows. The TV in the living room is often on with kids channels or football matches that her son in law watches. So of course Val will go up to her room to watch her shows herself. This has now become a criticism by her daughter as Val being unsociable and ignoring her grandsons. Despite Val explaining many times why its important to her. Her grandsons are her biggest joy, they know they can go and see her in her room and often do..Read to her and watch TV with her, so she never ignores them.
Val often does the washing up when it's left, will do housework etc but often on days when she doesn't feel quite right she won't. Again this is criticised lately as why ok one day but not another?
I'm getting quite upset myself about this as I feel they have not got the picture at all of Dementia. Maybe its because Val presents well, is younger than your average elderly person with the condition.
They often go out and leave her for a few hours on her own, sometimes without even telling her they are going out.. She just realises she's been left on her own.
Sometimes this happens with the 3 children at home too, which sometimes worries Val as now she feels she may not cope with 3 under 9 year old boys.
I'm finding this to be not nice behaviour, I am struggling to find an acceptable reason for it.
Perhaps its lack of knowledge, understanding?
Or maybe they are just being selfish.
But I strongly feel they are not not honouring the arrangement and are getting a great deal (rent and council tax free) for no real help and support for Val with her daily living in return. She has asked more than once if her daughter will take her to get some shopping, which the reply is 'I don't know' even this week she needs to go to vets to collect special diet food for her dog and she's not sure how she will get there. She is beginning to feel not like asking. Finding another way.
Her son doesn't see her much now he has his own family, he popped in the other day and Val said it was good to see him as its been a while, his reply was 'well you know where I live'. He lives a good 15 minute drive or at least 30 minute walk away from her, she no longer drives and cannot walk that far on her own without getting confused or in a lot of pain.
I just would like, if at all possible, someone to be able to come and see her family, daughter, son and son in law, and perhaps educate them on the complexities of Dementia and help them understand her and not just assume she is being awkward, lazy and anti social as she has been called in the past. It really does sadden me to see her being treated so poorly by people she has done so much for. I only hope by being educated and reminded of the needs of someone with Vals condition the situation will change for the good. Val has got very low, depressed and quite upset by all of this which I know will only exaggerate the Dementia. Today she got very confused when her hairdresser came to do her hair, she thought it was due in July.
I live nearly 100 miles away . I care for my elderly Dad who lives in a different county to me. I did want Val to live with me all those years ago but she decided she wanted to stay in her home, near her family and have all her healthcare there. Things would have been so different now if she had chosen a move. But I respected her choice and we have managed reasonably well to survive a long distance relationship. My own situation has changed now with caring for my Dad too which takes up a good deal of my time.

I'm sorry this is a very long post, I just don't know what to do for the best. I've considered trying to talk to them myself but I do feel someone with much more information and experience and also someone who is not directly involved may actually do better at trying to help Val in this distressing situation. She feels so alone while being in a house with her family who don't seem to care.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,382
0
Kent
Hello @Terrtel. Welcome to Dementia Talking Point.

Is the situation for Val as she says or have you witnessed it?

It does sound as if Val is being exploited by her family but I do know from experience and from reading posts on this site how many people with dementia do not actually tell it as it is.

It is not easy to get the true facts unless you are living with them.

I am not doubting your word and I do think this situation needs clarifying.

It might help if you contact the Dementia Connect support line.

 

canary

Registered User
Feb 25, 2014
15,721
0
South coast
Could you encourage her daughter and son in law to come on this site?
I expect they are finding the changes quite difficult too. We would be able to support them, explain things to them and offer advice from actual experience. There is vast collective knowledge here.
 

Terrtel

Registered User
Mar 22, 2017
6
0
Hello @Grannie G and @canary , I take your point and I do know that Val can be a little difficult at times but the behaviour has been witnessed by others, friends of Vals.
I've just had a forwarded text that her daughter sent her asking her to stay out of the house if possible so her and hubby can have an afternoon 'date' So Val is now feeling like she can't go home and is putting on her friend to kind of babysit her.
This friend is very good to Val and has seen the behaviour and is saddened also by it. She normally has a nap in the afternoon but is staying up to sit with Val. So now Val feels she's a burden. Her daughter messaged me directly last year saying she may not be bringing her mum halfway to meet me for much longer as she gets a little tired driving. We made a decision 4 years ago to meet halfway between homes so no one person has a 4 hour round trip drive after Val gave up her licence. It was the fairest way. So even though she gets fuel money and I arranged all trips to meet around her family life, not me, it still seems too much for her. So if me and Val are to spend time together it's down to me to do the full trip there and back to collect her, then the return again.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,026
0
High Peak
It's really not acceptable for Val's daughter to expect her to babysit their 3 children under 9 while they go out! Neither is it safe to do so...

I don't have any answers but suspect things could go horribly wrong as Val's condition deteriorates. Good luck - I hope you are able to find some answers.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,710
0
Hi @Terrtel and a welcome to Dementia Talking Point. As you've already found this is a very supportive place where you'll get lots of help and support.
This sounds a very tricky situation, does anyone in the family have Lasting Power of Attorney for Val's affairs as it sounds that soon decisions may have to made about whether things can carry on as they are. It's good that her daughter and family are there to support her, but as dementia advances trying to support someone with dementia and care for three small children becomes far too difficult.
If you have a good relationship with her daughter I think and honest talk is called for as to whether things have moved to a stage where they can no longer support Val, but they are maybe concerned about their own finances too.
I agree with @Grannie G about phoning the support line, you'll get lots of advice as to what to do next.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
10,759
0
Yorkshire
hello @Terrtel
a warm welcome from me too
I wonder how the Council housing officers might react to that text .... and the Local Authority Adult Services to the lack of care being provided; are they aware of your partner's situation, she has a right to an assessment of her care needs and a care package to support her
having a couple with 3 boys under 9 move in with a person diagnosed with dementia might have been a 'stop gap' but maybe the Council now need to know that your partner's condition is worsening and the living arrangements are affecting her ... maybe she (with your help) could ask about a Supported Living placement so she has a flat of her own but is also supervised and care provided
 

Terrtel

Registered User
Mar 22, 2017
6
0
Hi @Shedrech

Thank you for your reply. I will pass this onto Val. She loves her home, has lived there for nearly 20 years. She has 2 great neighbours and when her son moved out she did consider the home being too big for just her but feared being put in a block of flats, isolated from what she has known. She also has a dog who is getting on in years.

I think like most people with Dementia change of any sort seems overwhelming.


Hi @Sarasa ,
Thanks for the reply.
Val has sorted POA with my help, both her children and myself being jointly attorneys for her. We made sure that decisions were made where all 3 have to agree.


Hi @Jaded'n'faded ,
Thank you for you support, much appreciated 🙏
 

yourbestjudy

New member
Sep 30, 2021
3
0
Hi @Terrtel . I've just read your posts and this thread and would agree with @Shedrech thoughts about the situation. I think it's really important for some external and impartial agencies to be informed and involved in the situation so that Val has all the support and safeguarding in place that she needs and rightly deserves. If the family could become more educated about dementia and the effects and symptoms this might also help but of course they have to be willing to engage with that.