Both parents with dementia

[northumbrian71]

Mum asked us as a family to fight to get our AD dad out of S2 on ward which we did do & now he’s home. It’s a disaster, even with P/T carers & some care home daytime activities. Mum only did this out of pride & a promise she made to dad but otherwise now just gets annoyed about him being there. Moreover, after much concern about her behaviour, memory & lack of judgement, she has admitted that she suspects she is also suffering from dementia which afflicted all 5 of her cousins - but won’t get assessed. Neither parent is happy about having external care & mum refuses F/T carehome for either of them.

I am literally on my knees trying to cope with them and my adult daughter who is autistic and has ADHD & a personality disorder, as well as trying to run my business.

How common is it to have 2 parents with dementia?

I am also terrified about what this means for dementia in my future. Is it a foregone conclusion for myself & my siblings?

 

[leny connery]

wow, that is some tasks you carry. do not add that with worrying about what happens in the future. From what I have read and know, dementia is not passed on from either parent? so it will not necessarily be that you will get it too. Anyway, your present is hard enough to deal with. Most people seem to feel that a promise not to put our loved one into care home is sacrosanct, not to be broken. The reality is, there is a limit as to how far you can keep this promise. when it gets so that it harms the carer, and compromises the safety of the person with dementia, then it must be the time for care home.. there are more than one person to take care of the patient, carers, nurses, other professionals to see to the person's needs. no one can be expected to do it alone. Please look after yourself, okay? Lots of love,

 

[SAP]

This sounds incredibly difficult for you. Are social services involved at all?
It may be that you have to have a frank discussion with your mum about what you can and can’t manage and take a step back. With out wanting to sound harsh, your mum wanted the discharge to happen so she must deal with the consequences and if that means accepting more care or your dad going into residential care then so be it. Promises not to put someone in a care home are made with the best intention but usually without the full understand of what dementia care entails. If your mum is relying on you and your siblings to help her cope,then nothing will change until you step back. You already have a full time caring role for your daughter and trust me I know that is not easy and you will have had many battles along the way. What happens to any of them if you get ill ,carer burnout is a real thing.
People are living longer and having two parents with dementia is not uncommon. You need to deal with the here and now first .

 

[northumbrian71]

Thank you for responding. SS out next week as a discharge follow up, then it’s over to us.

I feel the need to step back but feel guilty that I’d be leaving 2 very mentally ill, old people to fend for themselves

 

[SAP]

I can understand that and the guilt monster is never far away but the alternative is that you run yourself into the ground and then none has any help. The only reason they are fending for themselves is because they won’t accept outside help but they are going to have to sooner or later. Explain your situation to the social worker,it is their job to ensure your parents are cater for not yours .

 

[Banjomansmate]

If you get worn out and break down then you will have your daughter left to fend for herself as well as your parents.
Can you be at the SS meeting next week and tell them that this discharge is not working no matter what your Mum may say to them?

 

[northumbrian71]

Family dynamics/politics - I can’t do that

 

[canary]

I'd be inclined to contact the safeguarding department at Social Services before this meeting and tell them that your parents are both "vulnerable people", that you are "unable to meet their needs" as your daughter is also vulnerable and that the discharge is not working, leaving them both "at risk of harm"
Do use the words in quotes.

There comes a time when what they need trumps what they want

 

[northumbrian71]

SS supported us wholeheartedly in bringing dad out of S2 & getting him home. The rest of the family were for, I was against.

I was wondering if anyone else had 2 parents with dementia at home & how they coped, juggling everything else?

 

[thistlejak]

@northumbrian71 - We had both MIL & FIL at home with dementia for far longer than we could cope with - neither of us were working and didn't have any other responsibilities.

They had very different presentations - FIL was placid and amenable to almost anything - 'come on lets get you a shower' - 'OK' - and followed my husband to the bathroom - give him something to eat and he ate it , took tablets , went to dementia Cafes - you get the picture. MIL was a whole different PWD - argumentative, violent, paranoid, didn't shower or wash her hair for 3 years and made FIL's life hell BUT if a Doctor or Social worker can to the house she would present as a 'bit dotty' but in charge of everything.

Things started to get more than we could cope with just after Christmas one year. We eventually got a really good social worker in the following April, she listened to us but it took FIL going missing for a whole day in July - 4th time that year with Police involved - for him to get the care and peace he needed by going into a care home away from MIL. MIL was sectioned 6 months later and eventually went into a different care home.

It is hard but there comes a time when you have to look at them as individuals, and what they need as an individual, rather than as a couple. FIL died after 18 months in his care home - he had a ball there, thought he was on holiday- had people who were kind to him - unlike when he was at home with MIL. MIL was also happy enough in her home - they loved her and even medicated she was still feisty.

I agree with @canary - tell SS you can't cope - it is no reflection on you - you are being pulled at least 3 ways.

 

[northumbrian71]

@northumbrian71 - We had both MIL & FIL at home with dementia for far longer than we could cope with - neither of us were working and didn't have any other responsibilities.

They had very different presentations - FIL was placid and amenable to almost anything - 'come on lets get you a shower' - 'OK' - and followed my husband to the bathroom - give him something to eat and he ate it , took tablets , went to dementia Cafes - you get the picture. MIL was a whole different PWD - argumentative, violent, paranoid, didn't shower or wash her hair for 3 years and made FIL's life hell BUT if a Doctor or Social worker can to the house she would present as a 'bit dotty' but in charge of everything.

Things started to get more than we could cope with just after Christmas one year. We eventually got a really good social worker in the following April, she listened to us but it took FIL going missing for a whole day in July - 4th time that year with Police involved - for him to get the care and peace he needed by going into a care home away from MIL. MIL was sectioned 6 months later and eventually went into a different care home.

It is hard but there comes a time when you have to look at them as individuals, and what they need as an individual, rather than as a couple. FIL died after 18 months in his care home - he had a ball there, thought he was on holiday- had people who were kind to him - unlike when he was at home with MIL. MIL was also happy enough in her home - they loved her and even medicated she was still feisty.

I agree with @canary - tell SS you can't cope - it is no reflection on you - you are being pulled at least 3 ways.

Thank you so much, everyone. I can’t change or control the situation but I can and will put personal boundaries in place.

There is Reuters research that strongly suggests I’ll begin showing signs myself at 66 but the forum won’t allow me to link to it.

 

[Andbreathe]

I have both parents with Alzheimer's. Still supporting them in their own home and working as well. It is hard. Can't pretend otherwise. We currently have the help of one carer as well as myself, but need another. Dad however is very resistant as he thinks they can manage everything themselves! Still struggling with this at the moment. I have found it best to concentrate on short periods of time. I have specific goals e.g. managing through to dad's birthday meal or Easter or whatever. Don't look too far ahead.

 

[Tilly13]

I also have both parents with Dementia.

One with Alzheimers the other with Mixed ( Alz / Vas ) like @thistlejak presenting very differently.
Supported at home for 2 years whilst I was working and now together in a Care Home
Not something either would have wanted but became the only way to keep them safe.
It wasn't easy but a family friend chatted unbeknown to me to Mum about ' these new Residentials places' listing all the benefits.
Never ever saying Care Home!!
I'd been looking at Care Homes local to me for months and so Mum starts asking me and we arrange for Care Home Manager to come and meet them. He was fab and so very respectful to them .
It was so very sad and I felt very guilty but they needed to be safe.
Dad was very reluctant but Mum knew she was frightened in their house plus she was no longer recognising it.
They have a shared bedroom and another set up as a sitting room. I set it up before they moved in.
I quietly started copying photos, removing some clothes and name labelling them , took a couple of pictures and ornaments, buying toiletries, ordered more medications etc -

We removed a couple of armchairs, the spare room TV etc and on the day we went we literally put coats and shoes on Dad took his newspaper and off we went. My parents have never ever asked about their house.
Mum has wanted to leave frequently.....
As their Dementia has progressed I've been pleased that the staff have got to know them before
I realise by being self funding and me having POA it gave us freedom to choose.
It is probably going to be the best thing for your parents to be in a Care Home however difficult that is in the short term to organise.
Because the continuing progression of the disease will mean everything can change and does!

I understand how very difficult it must be for you @northumbrian71 especially with your daughter to help too.
I didn't expect both or even one of my parents to have Dementia and once they did that changed all our lives.....
There has been no other family members with it and so like many people I did not have any knowledge of what the disease is actually like ( I make sure I tell everyone who asks after my parents now !!!!!!!)



Very hard both mentally , physically and emotionally.
Sending you love and strength