dementia and estranged families

[pmukena]

Good morning,

I'am a student from Durham and I am trying to help dementia patients with estranged families. in my town I have noticed that this is an area abandoned by the local government and want to bring these isues to the social services to better support them. I however do not have any relations with any dementia patients with estranged families, I know this is obviously a very touchy subject but I would greatly appreciate it if anyone here has been estranged from a parent with dementia or an individual newly diagnosed with dementia with estranged family, please comment on this thread. I would like to know how it has impacted you and what you would like or need for your local government to have done or do to have supported your family better.

thank you.

 

[nae sporran]

I look after my partner. Her family have never quite abandoned her, but it took a few years after diagnosis before either of her children began to realise the reality of her condition and the strain it put me under.
Social Services have been supportive of me when I needed respite with grants for time away and for massage sessions. They have not been slow to provide any extra care for C in the shape of personal care or a befriending / sitting service. I am not sure what they can do to bring other family members into supporting care. They either appreciate what is needed or they don't. If they won't listen to me then they won't listen to a social worker.
Sorry to sink your boat, but this is not an easy subject for students or social services. It is also common as far as my experience reading these thread goes.

 

[silkiest]

hi @pmukena, unfortunately dementia sufferers who have no family to support them can fall between the cracks. There is nobody to notice their physical or mental deterioration or to understand what was normal for them and how they have changed. There is nobody to act as their advocate and to get them the help that they deserve. But this is the same whether they are estranged or if they never had children and extended family has died.
I do not think familial estrangement will be on ANY local authorities radar as families do not have a duty of care (unlike the local authorities) . Each PWD has such variable needs that the main concern is just to assess what the needs are and how they can be met, which can be a huge task in itself when it is difficult to tell how much insight each individual has into their own problems.

 

[pmukena]

hi @pmukena, unfortunately dementia sufferers who have no family to support them can fall between the cracks. There is nobody to notice their physical or mental deterioration or to understand what was normal for them and how they have changed. There is nobody to act as their advocate and to get them the help that they deserve. But this is the same whether they are estranged or if they never had children and extended family has died.
I do not think familial estrangement will be on ANY local authorities radar as families do not have a duty of care (unlike the local authorities) . Each PWD has such variable needs that the main concern is just to assess what the needs are and how they can be met, which can be a huge task in itself when it is difficult to tell how much insight each individual has into their own problems.

Thankyou so much for your response.

 

[Addiscombegirl]

My Mum is estranged from one of our sisters as is all of the family. I had to speak to my sister for the first time in 20 year this week as Mum had a heart attack. It was stressful to say the least. My sister not having been around proceeded to think she knew everything about dementia. This was after I'd washed Mum up after she had messed the toilet in hospital.

In my opinion, people are estranged normally for reasons. Having dementia doesn't suddenly mean the two people will get on. After speaking to my sister, my Mum said she doesn't want to know my sister as she has nothing to say to her. Mum is newly diagnosed and capable of making the decision. Mum has relationships with two other children that are distant and close to my brother and I. Her view is they didn't want to know me pre-dementia, why would now and why would she expect them to care for me.

 

[Shedrech]

I just wonder whether you could give more details of your area of study @pmukena and what outcomes you are considering
I'm not sure LAs have 'abandoned' this issue as such ... no doubt they are mostly contacted by a spouse, child, family member or friend of the person who appears to need support from Social Services, and that first contact is trickier if a person has no family connections
but is it Social Services place to intervene in family relationships

 

[Peaceandforgiveness]

My dad has end of life dementia and has been estranged from me for about 20 years. It’s a complex and heartbreaking situation. I recently visited him in his end of life care. He also lives about 200 miles away and it’s expensive to visit. It breaks my heart I’m not a financial position to be there more often.