New here, advice on Grandmother welcome

[Clairebear1]

Hi all, here goes... my grandmother of 89 was diagnosed with vascular dementia in August 2015 although I would say it started around two years previous. It took a long time to get any help! She lives with my grandfather her husband of 68 years who is 94. Unfortunately my father passed away & there are no other family members so it's just down to me & grandad. They are both physically able within reason & still go out shopping etc. Since Christmas things have gone rapidly downhill. The hallucinations & dilutions have really ramped up & so has the nastiness! I have been reading some other posts on here about the crazy things that other people's relatives are experiencing & although it's so sad it's given me comfort that I'm not alone. I've been trying to get a urine sample from her for two weeks & finally managed to get her to the docs today. Still no sample but he's given her ab's just incase of a uti. We had a whole conversation today about how her mums living with them now & she's not paying her way. Last night she ran to a next door neighbor because a man in her living room was making her frightened & "she's not saying he might rape her"! But she wasn't sure. On Saturday she had her coat on when I arrived ranting that she wanted him (grandad) out of her house. He's just a lodger & she doesn't like him. When I tried to say it's grandad her husband of 68 years she said that he wasn't & that her husband died years ago. She was very aggressive & stating that he'd had another woman in the night before & did she dirty up the sheets! This saga started the morning before & she,d been going at him relentlessly. How my grandad is coping with this 24hrs a day I really don't know. He's already told me he won't have her go into a care home. There is not physical need at present that needs help so we're just struggling through day by day. I dread what's coming each day at the moment. Just hope that maybe she's got a uti which is making it worse & the tablets might help! Here's hoping!

 

[fizzie]

Welcome to Talking Point, there is a lot of support on here. I'm just rushing off but saw your post. Does sound as though you could do with some help. Well done for getting her to the docs and sorting out the antibiotics - hopefully they will start to make a difference tomorrow. Some people have found that a couple of paracetamol before bedtime help settle some people for the night -- might be worth a try.

You can phone Social Services Adult Care Duty Desk and ask for an assessment if there have been no recommendations from the Unit - services like carers visiting to help with the daily routine/personal care or day care that should be an option - a day centre where they have lunch and activities. As well as our social services centre we also have Crossroads Day Centre where people can go for up to 3 days

.
This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

Do have a look at it
http://www.ocagingservicescollabora...te-Communication-with-the-Memory-Impaired.pdf

You can also ask for a carers assessment - this will give him a break and . some 'free' hours of help possibly. it might seem early days to be thinking of a 'break' but a few hours here and there is a good idea from as early on as you can.

If you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that is needed (not the help that they get at the moment but what would be ideal for what they NEED). Attendance Allowance is not means tested and your Grandad might resist because he's worried it will start off the nosey authorities but it won't! and they've paid in for it all their lives, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year. To talk to someone, just call 0800 169 2081. Attendance Allowance might be stopped soon so do try to apply as soon as you can but do get some help with the forms

I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off to go and find out what help there is in your area over a cup of coffee - lots of friendship and support face to face and everyone in the same boat.

If there are issues with incontinence all areas have a continence service - you will need to look up your Trust or google your area plus Continence Service. The continence nurses we have had have been wonderful and pads are supplied free by the NHS.


The Dementia helpline is a useful number to have

Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

The Helpline is usually open from:
9am - 8pm Monday to Wednesday
9am - 5pm on Thursday and Friday
10am - 4pm on Saturday and Sunday

I hope some of this helps.
Others will be along soon xx

 

[Shedrech]

Hi Clairebear1
welcome from me too - so glad that you're already feeling comforted from reading here - you are definitely not alone

I hope that a UTI is the cause of your grandmother's distress

It sounds as though she may at times have slipped back to a time before her marriage, so to her the man in her house is a stranger who's behaving towards her in a very familiar way and I think any of us would find that frightening - at those moments she will probably not settle if you try to tell her the 'truth' as for her what she believes is real, and you not understanding or accepting what she is telling you will make her react - if you think of it, wouldn't you get angry at someone who was telling you 'utter nonsense' when you were already upset - maybe try some sympathetic noises and neutral sympathetic phrases and tell her you'll look into it (whatever it is) and sort it all out for her but how about a cuppa and biscuit just for now

It must be so difficult for your grandfather as he will want to comfort her when she's distressed - however it may be better if he can make himself back off and give her some space - if she is safe, suggest he leaves the room for a while - maybe make her a cuppa, then go back into the room calmly as though nothing had happened and just offer her the cuppa in a way someone else may do (so not 'forcing' her to accept him as her husband) - she may react well - if not leave her be for longer, just checking she is safe - maybe put some of her favourite music or TV programme on to distract and calm her - not at all easy, I appreciate

You're right to think of arranging more support - better to do that before you think it's really necessary then it's in place and helping - so contact Adult Services for an assessment of needs and push for as much support as you can - your grandmother may be able to still do things for herself but if they have carers in to eg help her in the morning and get breakfast it will take the strain from your grandfather and get them both used to having someone else in the house

It sounds as though it will be difficult for your grandfather to step back and allow others to support with the day to day care - chat with him about this - will he be more likely to be accepting if he thinks he is helping you, setting your mind at rest "because you are so worried that you can't help them as you have to work" (honestly, use every trick in the book) - let him know that it's no reflection on him as a husband and his caring, he's obviously doing a grand job, but at 94 he is not the stripling he was when they married and can't do it all on his own

May I just gently say that although I'm sure you will both do everything you can to support your grandmother at home - it's not always possible or beneficial to keep such 'promises' - and feeling that you must can lead to lots of guilt and distress - please keep an open mind for them - that's not to say I'm telling you to put her in a home! just don't you dismiss the possibility if that will meet your grandmother's needs and be better for your grandfather's health and wellbeing - he'll be no good to man nor beast nor your grandmother if he works himself into the ground

sorry waffled enough

just one last thing - not sure why getting a sample is proving so tricky - have you tried putting a large bowl or plastic bag in the loo before your grandmother goes - not exactly hi-tech but may do the trick

you're a wonderful granddaughter - I wish you all the best

 

[Lancshiker]

When my own father had dementia I found that he was almost going backwards through his life. Once he asked me for two weeks if he'd killed anyone and I finally worked out that he was reliving his army days. It may be that your grandmother is re experiencing something from the past that was upsetting to her and transferring it onto your grandfather.

It certainly sounds like an assessment is needed but I would approach the NHS first. Your GP should refer your grandmother to a specialist consultant. My experience was that that opened more doors than anything else. Alzheimers is a medical condition with a social impact and social care have no means by which to clinically prioritise your grandmother, and your grandfather as well because as you highlight, the stress of all this has an impact on all family members and he is getting on in years.

I would go to your GP and ask to be referred to a consultant at the hospital for assessment.

This is particularly hard for you because you don't want to undermine your grandfathers position but I think that why you need a professional in to set out a care pathway. You're clearly trying your very best but you can't do it alone. The NHS has received additional funding this year for dementia care. If you don't get it, write to your CCG and local Healthwatch branch for an explanation.