Family Tension and Dementia Diagnosis

[Sem86]

My Grandmother has just (last week) been finally diagnosed with moderate Alzheimer's after an 18 month battle. Her only daughter died 5 years ago and I am her only Granddaughter (I'm 32). She currently lives at home with my 81 year old Grandfather and I live about a 35 minute drive away from them and visit twice a week in person and call twice a day on the phone. Since we started the diagnosis journey my Grandther has become more and more verbally abusive towards me and has consistently asked me to "take her away" whereas she wants to stay at home and is functioning in there.

My current problem is that my Grandfather seems to be exaggerating greatly a lot of my Gran's behaviour (saying she's going wandering for instance - when I call her she's just nipped to the shops), that she doesn't wash / put clean clothes on (every time I go round she has) and that he does everything for her (I asked for a list so I can look at private carers to take some strain off and all he could give me was putting her medication packs together). I am not sure if this behaviour is linked to the aforementioned "take her away" and thinking that an exaggeration will get her taken into "a home".

My Gran would be self-funded in a care facility, and I understand that this is likely where she will need to be ultimately, but she is not at that level yet. She is fully physically independent and loves nipping to the shops and to the local library and has never had a problem (yet) with getting lost etc. After a recent stay in hospital she was given post-stay carers at home 3 times a day (on the info given by my granddad) and they stopped after 2 weeks as they simply weren't doing anything (she was dressing / washing / eating / taking tablets by herself with no prompt).

I am at a loss really as to what to do and it's really stressing me out and putting strain on my own marriage. I have a 1 year old and a 60 hour/week job and so don't really have a facility to have her stay with me (in the medium / long term). I do have Power of Attorney in place for both Finance and Health & Welfare.

Has anyone been in a similar situation? The information he is giving seems to be at a total conflict to what I and the care providers witness but I appreciate he is there 24/7 so I don't get a "full picture".

 

[karaokePete]

Hello and welcome to the forum @Sem86.

You are correct that living 24/7 with a person with dementia is very different to visiting. My wife sounds worse that your Grandmother but it is the constant frustrations of daily living/conversation with a person with dementia that cause me more grief than having to deal with meds, housework, finances etc - that just causes tiredness.

Maybe you are looking at the wrong person when it comes to support - maybe your Grandfather needs the help. Carers are entitled to a needs assessment too.

I wonder if you may find any local support services like a memory café to be of some use. You can do a post code check to see what's available to you by following this link https://www.alzheimers.org.uk/find-support-near-you

The full list of the very informative Factsheets, that cover all aspects of dementia, including care of the carer, can be found with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

 

[canary]

Hello @Sem86 and welcome to Talkong Point.

There is a little known phenomenon that is known on here known as "host/hostess mode" that everyone who cares for someone with dementia (especially 24/7 caring) has experienced. What happens is that the person with dementia can sort of surpress their symptoms and appear so very much better than they really are, but they can only do this for short times and the effort of it really wears them out. It seems to happen particularly when relatives that they dont see all the time, or medical staff come to visit. The person with dementia suddenly seems almost normal and the person visiting thinks you are exaggerating; they then go away and you have to pick up the pieces of someone who is then tired, confused and grumpy.

How do you know that your grandma nips to the shops and library? Is it your grandma who is saying this? My mum used to say that she used to go out the the shops, did all her own washing, cooking and housework (and she really believed it) when in reality she did none of these things. Believing that you are doing/have done things that you are/have not done is classic dementia. Likewise, how do you know that your grandma is the one who got herself washed and dressed? Not washing and changing clothes is another classic and many carers put a lot of effort into persuading the person with dementia to have a wash and change their clothes, especially if they know someone is visiting.

Many spouses of people with dementia do not want any social services involvement. The fact that the hospital thought she would need carers 3 times a day speaks volumes. Please, please believe your grandfather - it sounds like her is getting to the end of his tether and needs a break, though you do not have to be the one to provide it. It sounds to me as though he needs a period of respite.

 

[Spamar]

Hi, Sem 86,
Are you really sure that grandmother was doing everything? Did you have a chance to talk to the carers to find out what the picture really was? If she said, no, I’ve washed/dressed/ etc, were the carers really sure that she had? The carers can’t make her. There view might be invaluable.

 

[Sem86]

Hi Spamar,

Thank you for the reply.

I pushed the hospital to have the care in place for her to go home and was round every other day whilst they were visiting and spoke to several of the carers who told me they weren’t having to do anything for her and the agency insisted it stopped (wasted resources I guess). She has stayed at my house recently and seems to do all the things for herself that she says but it’s impossible to know what goes on in their four walls.

In terms of the shops and library - she’s constantly got in date library books so I know she must go. And my grandfather doesn’t go with her.

I want to try to help her keep independence for as long as possible I guess :£

QUOTE="Spamar, post: 1593013, member: 39568"]Hi, Sem 86,
Are you really sure that grandmother was doing everything? Did you have a chance to talk to the carers to find out what the picture really was? If she said, no, I’ve washed/dressed/ etc, were the carers really sure that she had? The carers can’t make her. There view might be invaluable.[/QUOTE]

 

[Spamar]

Yes, difficult for you. If nothing is obvious, you have to believe!
It was different for me, cos it was my husband with dementia.
Well my father and fil had it, but wasn’t involved in their care. Phew!

 

[canary]

You said that your Grandma has been diagnosed with moderate Alzheimers @Sem86 .

My Grandmother has just (last week) been finally diagnosed with moderate Alzheimer's after an 18 month battle.

The things that your grandad is describing are typical of moderate dementia. Please do take a look at this link that describes the mild, moderate and severe stages of dementia - scroll down a bit to see the symptoms of the moderate stage.
https://www.alzheimers.org.uk/about.../progression-alzheimers-disease#content-start
IMO your grandad will be telling the truth, but its difficult to see if you are not there all the time.

 

[Sem86]

Thanks to everyone for your advice - I have managed to get my Grandfather a Carers Assessment for Friday morning so I hope some on-going actions from there. My Gran is also having a risk assessment next week with the OT team so see what the actual risk is to her being left alone at home / going to the shops / library visits. There is a "care home" at the bottom of my street that specialise in dementia and can offer respite stays also so I am going to visit them this week to see if it might be suitable for my Gran. So hopefully some relief in sight!