Dementia..any coping strategies gratefully received.

[Springsnake]

It’s the same conversation every day ,I’m never there less than 2 hours ,some days 4 hours she Cry’s when I leave and says she wants to live in my house .
for the last 20 years she hasn’t been the slightest bit interested in me or her grandchildren seriously,no visiting ,not interested
,dh is getting mightily pissed off at being left at home with the kids every day for hours at a time,I’m struggling to keep smiling at every visit ,because her life has changed ,I understand she’s missing her old life ,she’s so confused I explain the situation,how she ended up in the care home ,time after time after time ,often more than once in the same visit.
I can feel my mental health slipping ,I feel like I’ve gone down the rabbit hole when I’m with her ,
I’ve 2 children with SN ,so life was already very challenging before she moved near me .

I think you need to cut down the visits so it’s not every day. It sounds hard but you may actually be doing her a favour as it’s possible she’s getting more distressed by the daily visits as it’s more often for you to leave.
Have you had a chat to the care home? Find out how things are for her when you’re not around. They may also say come less.

You need to have something left for your DH and children and also, importantly, for yourself. I think your children’s needs trump those of your mum (and I say that as someone with adult children - when they have children of their own I’d expect them to always put them before me). Draw back a bit if you can.

It's so hard to deal with.
My mum was in a carehome with dementia for 6yrs.
It really is mentally draining and heartbreaking.
My mum didn't know who we were for the last 2yrs.
Maybe cut down your visits.

Your own MH is important.

Do you have to go every day? It's likely she is living 'in the moment' and is completely unaware that she says and does the same thing every time you visit. She may also have no memory of your visit.

Do the staff say whether she is content when you are not there? Maybe your visits upset her (not your fault!) so perhaps cutting them down would benefit you both?

The book 'Contented Dementia' might help. See also the 'Elderly parents' board on MN.

We found we had to tell MIL things like she can go home ''when the doctor says you can", which neatly places the decision (blame) elsewhere.

I'm no expert but both PIL had/have dementia, so you have my sympathy.

The staff say she spends her time looking for me when I’m not there ,they say they find her in different peoples rooms and she tells them she can’t find me .
Then she’s angry when I arrive ,crying ,shouting saying she was worried where I was and she couldn’t find me ,then we spend 2 hours having the same conversation from every other day ,then the crying starts when I have to leave and it takes usually 45 minutes to leave

Oh God that sounds like my mum.
She would be looking for her children or her mother it was so hard to deal with.
When visiting if we left her room, she would completely forget we were there when we returned. So I knew when I left she would forget about seeing us.

This book helped my Mum (and I read it too) massively. Just immerse yourself into their world.. don’t try to keep them in yours. So much easier for everyone involved.
I don’t mean to sound flippant, but your loved ones become a new, different person. One you can still love and talk to.. but you have to, in some respects, let the old person go.
Andre, try ..if you can, to keep a sense of lightens and humour,. They will always ‘feel’ a loving, safe and cared-for atmosphere around them even if they are not quite sure where they are.. x

Contented Dementia: 24-hour Wraparound Care for Lifelong Well-being

@Springsnake
The care home gave my mum a doll. At first I hated seeing her with it. But it did calm her down when she was anxious, looking for us.
She bloody loved that doll and was so happy and relaxed when she had it.

Dementia is an awful illness. However, whether you visit daily or once a week, it’s probably the same to her because she can’t remember and all the rest of the time is spent searching for you. I agree about cutting down your visits.

It’s not just that either ,not wanting to put myself,but when someone goes in to a care home there is so much to organise,and sort out ,banks solicitor,estate agents ,hospital..house clearance ,it’s overwhelming,when there’s no one to help u

I will look for that book at the library ,Thankyou both for suggesting it

I used to work in dementia homes, the advice when training is to 'step into their reality' rather than trying to make them live in ours. If she's distressed, the care home should look at distraction as she's possibly remembering you as much younger, hence why she thinks she has 'lost' you. They should be working to find something which lessens the distress, be it a toy (doll, bear etc) an item of clothing or an activity, the adult colouring books sometimes help. Yes, it takes time to work out what relaxes each person, but it can be done. Try to take something with you that she likes, does she like music, a particular treat etc. It's not the same as treating them like a child which is what many family members find hard, it's finding the part of their world where they are relaxed rather than fearful

Agree with PP about cutting down visits, For your own mental health.
Have you spoken to the manager and see if they have any advice?

Yy to the doll or similar. I took my mum a giant teddy bear wearing a tshirt saying "I love you! Please cuddle me". It was the first time she smiled, when the care staff gave it to her. We named it Fred after my Dad and I am sure it gave her comfort.

Two other residents there had special dolls too, and both got a lot of comfort from them. Can you get lots of pictures of you to go in her room, and make an album too, with pictures of her favourite people and places? Encourage the staff to look through it with her if they have time. (I used an A4 folder and printed out pictures to go in those clear plastic folders. It meant that we could replace it when it got lost/stolen.)

Yy to both of the books recommended above. And yy to looking after yourself. Are you an only child? I was and it is a huge pressure on you to try to look after her and your family too. Concentrate if you can on befriending the care staff and helping them to help her. There is only so much of you to go around, but they are there 24/7, and the more that you can support them - bake them biscuits, make sure that you take in what they ask you to, talk to them - the more they can do to help her.

It sounds as if it is early days for her settling in. She will get better, particularly as the weather gets better and days get longer. But look after yourself, your dh and kids too. You won't be of any use to your mum if you are ground down by it all and dementia can be so exhausting/demoralising for you.

(The staff used to help me to slip away from mum, when she needed to go to the loo, or when I needed to go. I felt awful doing it but she wouldn't let me go otherwise, and got more upset at me leaving than if I just disappeared.)

Best of luck and do keep posting. You are not alone in this.

Thanks everyone for replying,all good advice

Two final thoughts:

Try to distract her when she asks why she has had to go there. She won't remember what you say. She doesn't want a long explanation. She wants to go home, but that can't happen. I found that "The Doctor said that you needed to come here" helped as she trusted doctors. Also it's OK to lie. "Its a little holiday for you mum whilst you get better. It won't be long. Now shall we look at some photos?" gives her comfort/reassurance. She won't remember what you said and hold it against you.

Finally, painful/frustrating/traumatic as this stage is, you will feel glad that you invested time in caring for your mum, later on. (Not at the cost of your dh and kids, but as much time as you feel able to.) When she is gone, I found it much easier to know that I had been there for her as much as I could.

HTH

The staff say she spends her time looking for me when I’m not there ,they say they find her in different peoples rooms and she tells them she can’t find me

This is something that the staff need to be managing, they need to find ways to distract her and also need to consider if it is helpful for you to tell you this, I think perhaps it's not - you don't need to know everything.

I think for your benefit, and probably your Mums, you need to cut down the visits. You, your children and your DH are important to. Look after yourself and put your own oxygen mask on first.

Even if you don't see her or talk to her do still pop in to make sure she looks OK, no bruising etc.

People like that are so incredibly vulnerable and difficult to care for. Keep the staff on theirs toes at least knowing she has a relative popping in....

You can only do what you can do. I don't know think anyone should or needs to go through this, it's heart shattering.

But even popping in without making personal contact each time... Will salve your conscious and at the very least keep her relatively safe.

Rule one - whatever you do it won't be right. Once you've got your head round this life gets much easier.

I agree with those who have said don't go every day. It is likely your mum has no concept of time so won't realise. Also don't feel you have to stay for long. It does vary from person to person so do talk to the staff but all my Dad understood was that ' special people visited sometimes' If he wondered about us staff used phrases like 'they will be coming later'

Another thing we did was leave photos of family events with information written on them to help the staff talk to him so a picture of recent holidays with where they were and who they were so staff could show them to him and say 'oh look person x and their children were in place y last week - it looks nice'

It is an awful time but don't sacrifice your own mental health

Christ Snowdropsdelight.. keep the staff on their toes.. jesus.

Senior dementia worker here..
You need to take care of yourself first and foremost. Don't kill yourself trying to visit every day if you can't manage it or even if you just don't want too. The staff should be helping your mum and managing her behaviour well and I totally agree that we join them in their reality and work from there.. I've told many a son/daughter to just call us and ask how they're doing rather than visit if visits are too much. I've had family members crying on me after their mum/dad swore at them or tried to hit them and sometimes it's better for everyone to let us do the care and take a huge step back. It's not easy though I understand that but putting yourself first isn't wrong
Best of luck

The way things have ended up ,there’s no one to visit except me my dh and dc ,dc don’t want to go because they say they get stuck there for hours ,so now they won’t go ,and my dh won’t go with out me ,and plus no one to leave kids with if we are both there ,so it’s literally just me every day.
Where she lived before everyone her age died ,and there’s no family I’m an ,only child .
As horrible as it’s sounds it would be easier for her if she forgot me ,because she’s getting so upset that I’m not there all the time ,.
I took my youngest child in with me today ,he sat on her bed and she asked him who is mummy was and why he was in her room.then she got distressed and I had to phone my daughter to come and collect him

How is her short term memory? If she’s going to forget whatever you say very quickly anyway, then when you leave why not say you’re just e.g. popping to the shops - but you’ll be back very soon. It’s what I did with my mother - with variations - and within about half a minute she’d forget that I’d been at all.
I once nipped back within two minutes since I’d left something on a chair - It was a dementia-only care home with a few residents who’d take anything that took their fancy - and she’d completely forgotten that I’d only just been.

Do cut your visits down! I know all too well how draining and wearing they can be, but more importantly, if you’re there so long every day it’s not going to help her settle. Once or twice a week - and I’d honestly keep them shorter.

During the early weeks and months with my mother it was an endless litany of, ‘I want to go home!’ and ‘Get me out of here!’ but there was no way she could go home - she simply wasn’t safe to be left alone at all any more.

Then there were angry accusations that siblings and I had only put her there because we were after her money - a sick joke when you considered the care home fees! But she had absolutely no insight into her condition - as far as she was concerned there was nothing wrong with her - had no idea that she could no longer even make herself a cup of tea.

I don’t mind admitting that I often had to psych myself up to go, and sometimes I’d chicken out because I just couldn’t face it.

It did get better eventually, but it took quite a while.,

If you haven’t already found the Alzheimer’s Society Talking Point forum, do give it a try. There’s a forum specifically for carers of people with dementia - I found it a lifeline. Whatever you’re going through, someone will have been there. There aren’t often any easy answers but at least you can let off steam to others who know exactly what it’s like. People who’ve never been there usually don’t have the faintest idea.
All the best.

Thankyou everybody,I really appreciate the messages ,
So is Alzheimer’s similar to dementia then?

It’s a type of dementia yes. Has no-one explained your mum’s condition to you? Have a look at the AlzheimersSoc website.

Alzheimer's is a type of dementia. There's lots of different types, Alzheimer's is the most common.

Reduce your visits. You could be there all day every day and I promise you she would still be distressed about something.