What can we do?

[Nikki Noo]

Hello I am new today.
My nan has Alzhemiers, she has lived away for 12 years (when my grandad retired) with my grandad and 2 years ago they moved back to be by their family. We thought they were moving back because of my grandads health (he has had various forms of cancer and goes for 3 monthly visits to remove new growths). It turned out my nan has Alzhemiers and my grandad wanted the support of his family.
When they moved back she was just a bit forgetful but now she has deteriorated so fast.
She doesn't drive and never used to be one to go out on her own but she used to cook us grandkids lovely treats and fantastic cakes. Now though she doesn't cook, clean (the house), wash regularly or general hold a conversation. She says things all mixed up and none of it makes sense. She has gone back 30 odd years and still thinks her parents are alive (although my nan is 72).
All my nan wants to do is go for drives constantly, grandad takes her out every day and he says when the place they were heading for she is asking why she is out and she wants to go home, they return home and she is asking him why he hasn't took her out.
As I said above grandad is not in great health himself but he says he is "old school" in that he married her and he has had 52 wonderful years of marriage and he should remember that when she turns on him (she hits and pinches him - saying she is joking but its for no reason).
All of our family work, my mum gets home the earliest at 2pm and they are round at our house at 3pm, they go home for about an hour and come back about 5pm for half an hour and come back at 7pm till 9.30pm usually.
Nan is always on the edge of her seat asking when they are going home (even though grandad said as soon as they get home she is asking to come to our house).
My grandad is completely worn out as is my mum. I have two sisters and one of them has experienced a nasty side of nan when she was looking after her and now unfortunately this has really affected her relationship as she says this person is not her nan and she wants my grandad to start thinking of himself as nan doesn't know what she is doing and he is killing himself trying to cope with it all.
Grandad said he was going to get respite last week and when my mum went to take my nan shopping out of the way so he could phone for the help he had changed his mind. He doesn't know what he is doing from one day to the next - he said he feels like his head is going to burst.
What can we do to help him? Half of us think a few days away a week for nan would be best and grandad definately needs a rest, but the other half think how can we put her in a home for those days - it would break grandads heart and I think it would kill him living without her if it turned out he couldn't cope and she had to stay there.
Our family isn't coping very well, we all love them so much and it is so hard to see grandad looking worn out and nan being horrible to him when he is 5* angel but yet he doesn't seem to help himself. He doesn't realise he is 78 and help is out there.

 

[noelphobic]

Hi Nikki Noo and welcome to the list. I'm sorry to hear what you're all going through. If your grandad isn't ready to let your nan go to respite, would he consider letting her go to a day centre if there's one available in your area? My mum went to one in the early stages of her illness. She went twice a week and loved it, so much so that one of the many hard things about her finally going into permanent care was that she could no longer go to the day centre.

Obviously in time you may need to consider respite and eventually it is possible that your nan will need to go into permanent care. I would think that a day centre could be a good first step, even if it's only one day a week.

 

[Amy]

Hiya Nikki,
First of all a question. Is your nan under the care of a GP? If not then he needs to be involved straight away. There may be medication that might help nan's situation, but the GP can put you in touch with other sources of help.
Before you jump straight into thoughts of fulltime care, there are other sources of help. The CPN (community psychiatric nurse), can offer nan and grandad support.
A Social Worker can help sort out day care, either coming into the home, or at a day centre. (My dad was very reluctant to involve a Social worker as he had the old fashioned view that mum would be taken away and 'put in a home'. I think in the past that there was a stigma to having a social worker involved, so make sure grandad does not have this view). We had a wheelchair and ramp provided, a bath seat, toilet aid, all sorts, before mum finally had to go into a Nursing Home for 24 hour care. By the time we reached that point, dad realised that he could nolonger cope on his own, and that the most loving thing to do was have mum cared for elsewhere. With dad I had to push him to get help, your mum may have to do the same; be there when he sees the GP or CPN, persuade him to 'try things out'.
I'm sure others will give you plenty of ideas.
Bye for now.
Amy

 

[Kathleen]

Hello Nokki

I can see your grandparents almost mirrored my parents 18 months ago.

They were married for 54 years and Dad too was exhausted looking after Mum 24/7 he also changed his mind about day care when they phoned to say Mum could start, he was afraid she would be frightened without him there, the reality was she probably would have been fine.

He adored her but was so tired he was at the end of his tether when he said he needed a break for a few hours a week, unfortunately, fate took over and he had a massive stroke a couple of days later, that led to his death, he tried so hard to stay with us, but the damage was too severe to recover from.

I don't know if the pressure of caring for Mum was a contributing factor or not, but as he was a very healthy 75 year old when he was taken ill, I wonder sometimes, but he always put Mum first, so maybe he was feeling poorly for a while and said nothing, who knows.

Mum's reaction to his illness was unexpected to say the least, she has never once asked where he was or looked for him, hell for us, but wonderful for her sake.
We had to place her in residential care as that was the best option for her sake, and she has been there for the last 18 months, never asking after Dad, but she used to talk to him in her room at night, so maybe he visits, who knows.

The point of this rather long rambling post is that your grandad needs to look after himself for both their sakes, if he is worn out and sudden respite is needed, everyone will suffer.

I would see if he will take the day care option with one of you volunteering to go with her, that was the plan for us, so if Mum was upset, we would bring her home again, that was the only way he would agree to it.

Good luck with whatever route your grandad chooses, it is yet another tough decision to make. They are lucky to have such a close loving family.

Kathleen

 

[Nikki Noo]

Great Advice - Thanks

Hello Noelphobic, Amy & Kathleen

Thank you all very much for your great advice.

Noel-
We have got grandad all the info on the day centres nearby. He seems to think though that she would not stay there without him. He said recently that he would organise the bus to come and pick her up and not tell her she was going just when it pulls up say oh your going on a trip today kind of thing so she can't argue. It sounds cruel but he said he wouldn't be able to drive her there because she wouldn't leave him and he would get upset and not want her to go either.

Amy -
Nans GP has been involved from the very beginning. A nurse goes to their house once a month to check on how they are doing. She last went on Friday and doubled nans dose of Aricept.

On the nurses previous visit she gave grandad information and a telephone number to call about respite. With regards to what you said about Social Workers about the old fashioned idea that she will be put in a home is 100% my grandad thoughts.

None of us want her to go into a home we just want Grandad to get a break maybe 1 day a week when we are not around for him because of work, night times are fine because we are available and take the pressure off.

With regards to "pushing him to get help" mum had another word with him last night and grandad said he is going to phone and sort something this week. He is very set in his ways and if we all push him he will push us away and none of us want that.

Kathleen -

I am really sorry to hear of what happened to your dad.

It crazy in that before I found this website I thought nan was quite unique. Other people we know that have had Alzheimers were all different to my nan.

What you have experienced is what we all feel will happen and that is why we need to help grandad realise now that he needs "time out".

Thanks again x

 

[Nikki Noo]

Great Advice - Thanks

Hello Noelphobic, Amy & Kathleen

Thank you all very much for your great advice.

Noel-
We have got grandad all the info on the day centres nearby. He seems to think though that she would not stay there without him. He said recently that he would organise the bus to come and pick her up and not tell her she was going just when it pulls up say oh your going on a trip today kind of thing so she can't argue. It sounds cruel but he said he wouldn't be able to drive her there because she wouldn't leave him and he would get upset and not want her to go either.

Amy -
Nans GP has been involved from the very beginning. A nurse goes to their house once a month to check on how they are doing. She last went on Friday and doubled nans dose of Aricept.

On the nurses previous visit she gave grandad information and a telephone number to call about respite. With regards to what you said about Social Workers about the old fashioned idea that she will be put in a home is 100% my grandad thoughts.

None of us want her to go into a home we just want Grandad to get a break maybe 1 day a week when we are not around for him because of work, night times are fine because we are available and take the pressure off.

With regards to "pushing him to get help" mum had another word with him last night and grandad said he is going to phone and sort something this week. He is very set in his ways and if we all push him he will push us away and none of us want that.

Kathleen -

I am really sorry to hear of what happened to your dad.

It crazy in that before I found this website I thought nan was quite unique. Other people we know that have had Alzheimers were all different to my nan.

What you have experienced is what we all feel will happen and that is why we need to help grandad realise now that he needs "time out".

Thanks again x