Please Help

misslouchar

New member
Aug 9, 2018
5
0
Hi all,

Just today my Nan was diagnosed with vascular dementia, mixed dementia and a tumour. The consultant says that it’s not worth putting her on any medication to slow the process down and they won’t operate on the tumour due to her age, 84. We were literally packed off with the ‘reassurance’ that the hospital will write to my Nan’s GP along with the Alzheimer’s Society and Social Care. My Nan wasn’t invited to attend today but will need to see the neurologist soon. All of the above is going to take a frustrating 6 to 8 weeks! Nan is still unaware of the diagnosis from today.

In light of the above and due to the fact no medication is going to be prescribed, what stage of dementia do you think she’s at? She’s still currently living at home alone and is able to look after herself with the help of the family doing her shopping, washing, cleaning and popping in daily. The consultant said she needs carers but I don’t know what they would do exactly.

Nan is displaying very odd behaviours, for instance, she has taken a very passionate dislike to her daughter inlaw who she is actively accusing of the most ridiculous things; stealing her clothes, keys, money etc. She has also ripped up most of the photos she had proclaiming not to need them anymore and has thrown away all of her clothes bar one outfit which she wears every day and will only eat the same meals each day, porridge for breakfast, cheese and tomato sandwich for lunch and shepherds pie for dinner. Her bungalow now echos with the amount of things she has either destroyed or just launched out the back door including furniture. She seems to be on a complete mission to empty the property which is absolutely heart breaking for all of us. Is anyone else going through the above and if so, how’re you dealing with it?

She’s just recently started to make up bizarre stories that aren’t true and today called me in a panic saying that she heard my mum in the house who she claimed was shouting for her help but she couldn’t find her. My mum obviously wasn’t there but Nan was adamant that she was and was so distressed. You can’t have a normal, two way conversation with her any more as she reverts anything you say to when she was a child and was evacuated. Again, is anyone else going through similar?

It’s taken 11 long months to get the diagnosis we got today and that has been one hell of a battle. I know this is sadly the case for many.

Thanks for listening and apologies for the long post :/

Any advice will be greatly received.

Louise
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Hello @misslouchar ...it sounds as if your Nan will need the care package...you ask what will the carers do? Hopefully help her to feel more secure. All the clearing out she is doing may be an attempt to create order, where there is none in her mind. It is so scary and upsetting for you all when someone who is so loved, gets such a diagnosis. Now that you have the diagnosis, you can help and support your parents by researching what help might be available in your area. Age U.K. provide a lot of the support for dementia patients in my area, working in conjunction with the Altzheimer’s Society. They can provide everything from a meals service, to help,with laundry, or daycare or dementia cafes, singing groups.
The decision not to operate on the tumour is upsetting. My late husband had cancer and we were told that the older you are, the slower growing the cancer. No doubt this has been a factor in the decision about your Nan.
You will find the members are very supportive and experienced. If you have any specific questions, or you want to share your feelings or fears, please keep posting.
 

misslouchar

New member
Aug 9, 2018
5
0
Hello @misslouchar ...it sounds as if your Nan will need the care package...you ask what will the carers do? Hopefully help her to feel more secure. All the clearing out she is doing may be an attempt to create order, where there is none in her mind. It is so scary and upsetting for you all when someone who is so loved, gets such a diagnosis. Now that you have the diagnosis, you can help and support your parents by researching what help might be available in your area. Age U.K. provide a lot of the support for dementia patients in my area, working in conjunction with the Altzheimer’s Society. They can provide everything from a meals service, to help,with laundry, or daycare or dementia cafes, singing groups.
The decision not to operate on the tumour is upsetting. My late husband had cancer and we were told that the older you are, the slower growing the cancer. No doubt this has been a factor in the decision about your Nan.
You will find the members are very supportive and experienced. If you have any specific questions, or you want to share your feelings or fears, please keep posting.
Thanks so much for your reply, I’ve found it quite reassuring in this very difficult time. I’m really sorry to read about your husband, cancer and dementia are just the cruelest diseases. I should have explained in my post that the tumour isn’t malignant and they think it’s been there for some time.

The fact that the consultant doesn’t feel medication will help leads me to believe that her dementia is quite advanced but I don’t feel it is? Maybe I’m in denial? I know for a fact that she won’t accept carers, it’s all just so sad.

My grandad, her husband, on,y passed away in February and she hasn’t properly grieved, if at all. She’s just seemed to accept it and has moved on if you like.

Another thought I have is the whole care package in general. Who will pay for it? She does own her own home so I’m not sure if a charge will be put on her house.

My last worry of the evening is that the consultant has said that the GP will inform her of the diagnosis? Does anyone else feel this is a pointless exercise? It will only cause her further upset and she won’t believe it anyway. My mother sat her down about six months ago and shared that she thought she had signs of dementia and she went ballistic.

Again, thanks for your reply.

Louise
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
Hello @misslouchar, welcome to TP from me too.

I notice that you are looking for information and a great place to start a search is the AS Publications list which covers many topics including care, medication and changes in behaviour. You can find the list by following this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

To find out about some of the support services in your Nan's area you can do a post code check by following this link https://www.alzheimers.org.uk/find-support-near-you
 

Beate

Registered User
May 21, 2014
12,179
0
London
Any property is ignored in a financial assessment for home care so no charge will be put on her house. She will be self-funding if she has savings over £23,250, part-funding if she has between £14,250 and £23,250 and not paying at all if she has under £14,250 in the bank.
 
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Lindy50

Registered User
Dec 11, 2013
5,242
0
Cotswolds
Hi Louise @misslouchar
I’m so sorry to hear about your Nan. There’s so much to think about isn’t there?
One thing I just wanted to say is that the fact that medication hasn’t been prescribed doesn’t indicate any particular stage of dementia. This is because medication isn’t used in cases of vascular dementia (as opposed to Alzheimers).
I think your nan will need Carers and she’s far from unusual in not wanting them! @Beate has given good advice on the finance / payment situation.
You must be in shock, especially as you have only recently lost your grandfather. I hope you find this forum helpful and supportive.
Lindy xx
 

Malalie

Registered User
Sep 1, 2016
310
0
Hello Louise, and welcome.

Couldn't just read and run - it's late so a small reply - I'll just address a few points.

The things that you are talking about are all very normal for people with dementia - it's not just your Nan. There are loads of people on here coping / have coped with these distressing situations and have many strategies to help. Do keep posting and asking - you will find lots of ideas and support.

The stages of dementia are really pretty unimportant as far as I can see - every person with dementia is different. There are people around who have been living with dementia for decades, or my MIL who probably had it for 2 yrs before diagnosis and died of it two years later.

The Doctor thing. If they feel that they need to give a clear and direct diagnosis to their patient - that's what they will do. I don't blame them really. MILs doctor at the memory clinic did, in the presence of her son, and it apparently just went over her head. We don't think she understood it, or more probably, she didn't remember it 5 minutes later. (Her GP was much more pragmatic - she said to MIL "I don't think you have a memory - you have a forget- ery" It made Mum laugh, and she agreed completely.) What was less appreciated was the letter delivered to MIL from the memory clinic - with her full diagnosis and emblazoned with an NHS Mental Health Logo on the top!!!!! Despite us having Health and Welfare POA. Her carer came in to find her in tears with the letter in her hand. It was upsetting and unnecessary. She was so distressed.

Last point. Please try and save your family documents in any way that you can. I don't know why it is that some PWD want to destroy things, but I've heard many people say the same thing on this forum over the years. I'm sure that your lovely Nan would want to have the family history / old photos etc preserved for the future generations if she was in her right mind. ( Not to mention insurance documents, will etc!)

Could I ask if your Nan has any children surviving? A Power of Attorney will be necessary in order to look after her finances, and I'm sure people will be along to give more advice about that. XX
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Hi all,

Just today my Nan was diagnosed with vascular dementia, mixed dementia and a tumour. The consultant says that it’s not worth putting her on any medication to slow the process down and they won’t operate on the tumour due to her age, 84. We were literally packed off with the ‘reassurance’ that the hospital will write to my Nan’s GP along with the Alzheimer’s Society and Social Care. My Nan wasn’t invited to attend today but will need to see the neurologist soon. All of the above is going to take a frustrating 6 to 8 weeks! Nan is still unaware of the diagnosis from today.

In light of the above and due to the fact no medication is going to be prescribed, what stage of dementia do you think she’s at? She’s still currently living at home alone and is able to look after herself with the help of the family doing her shopping, washing, cleaning and popping in daily. The consultant said she needs carers but I don’t know what they would do exactly.

Nan is displaying very odd behaviours, for instance, she has taken a very passionate dislike to her daughter inlaw who she is actively accusing of the most ridiculous things; stealing her clothes, keys, money etc. She has also ripped up most of the photos she had proclaiming not to need them anymore and has thrown away all of her clothes bar one outfit which she wears every day and will only eat the same meals each day, porridge for breakfast, cheese and tomato sandwich for lunch and shepherds pie for dinner. Her bungalow now echos with the amount of things she has either destroyed or just launched out the back door including furniture. She seems to be on a complete mission to empty the property which is absolutely heart breaking for all of us. Is anyone else going through the above and if so, how’re you dealing with it?

She’s just recently started to make up bizarre stories that aren’t true and today called me in a panic saying that she heard my mum in the house who she claimed was shouting for her help but she couldn’t find her. My mum obviously wasn’t there but Nan was adamant that she was and was so distressed. You can’t have a normal, two way conversation with her any more as she reverts anything you say to when she was a child and was evacuated. Again, is anyone else going through similar?

It’s taken 11 long months to get the diagnosis we got today and that has been one hell of a battle. I know this is sadly the case for many.

Thanks for listening and apologies for the long post :/

Any advice will be greatly received.

Louise

Hi @misslouchar My dad has alzhiemers and oesophageal cancer and he is terminal. He is on palliative care only. His oncologist decided this was the best option and I agreed as did dad although dad will agree with most things. She decided this because dad is 88 and very frail and the dementia was also taken into account. She explained because of dads frail state he would not benefit from chemo and it would very likely make him ill and possibly even kill him and it would also be very likely effect his dementia. Basically it may or may not prolong his life and it would be better to carry on as he is because is very comfortable at the moment. He has been given a stent so he is able to eat and may get a week of radiotherapy when and if he starts to get uncomfortable.

This was almost four months ago and dad is getting along very happily but he is a bit more tired than usual, I think that the hot weather we have had recently may have contributed to this. To be honest dad is doing amazingly well and I hope he continues this way for some time.

As your nans tumour is not malignant and possibly slow growing I can see the reasoning behind not treating your nan as surgery could set her back and if it is slow growing then it may just be better to just watch and wait.

As for your nans change in behaviour I don't know it may just be the dementia, she may be fussy about what she eats but at least she does eat. I have a real problem with getting dad to eat and he has been living on prescription shakes and ice cream these last couple of weeks but his behaviour is ok.

Dad still lives alone with a lot and I do mean a lot of help from me but your nan may benefit from carers if she is considered unsafe and is doing odd things, it probably depends on how much family are prepared to do. I am doing it all at the moment and it is hard. I may need some help soon though if dad gets worse.

As for telling your nan I don't see the point really. Dad only knows he has cancer when he goes for his check up, he forgets immediately afterwards and I am not going to keep reminding him.

I think some doctors think quality of life is more important than prolonging life and I find myself agreeing with that. I don't see the point of invasive or uncomfortable treatments if it is not going to improve the outcome and in dad's case this has been the case. He could have underwent weeks of chemo by now which will not cure him anyway and he may have suffered severe side effects due to his frailty but he is still here, just a little weaker and more tired than before but he is happy and that is what counts.

Sorry that was such a long post but I thought that it might be of some help to you.
 

misslouchar

New member
Aug 9, 2018
5
0
Thank you to all that have replied, it is ridiculously assuring to know that I'm not alone in this cruel, dementia bubble.

I took Nan out today and she seemed more confused than ever despite going to the same shops she has always visited, it's heartbreaking. What I'm finding really difficult is that her children are not coping at all. They seem to be so angry with her and take all her 'dementiaisms' personally. I just want to scream that she can't help it!! One of her children, my uncle is next to useless, hardly visits or calls and is no help in the care of looking after her.

No word yet from any of the 'professionals' who are supposed to intervene. Sadly, not shocked by this.

Hope all of you that are reading this are well... chins up and all that :/

Louise
 

SeismicPenguin

Registered User
Feb 28, 2018
24
0
Scotland
Hi Louise, I'm 3 years into caring for my mother who was diagnosed with Alzheimer's. I live with her and am her full-time carer. My mum's wellness varies day to day - the confusion is hideous and it hits you hard every time you realise there's a new confusion, such as your Nan not dealing with her usual shops. People deteriorate at different rates - I'm lucky in that my lovely Mum seems to be on a slow slide - but it's painful whatever.

My mum also destroys photo albums and chucks stuff out and then lays the blame at my sister's door. Never my brother. And if Mum secretly thinks it's me then she's not about to say! The repetitions about wartime etc - stories I used to love to hear - become so tiresome when it's always the same story and for the umpteenth time. It really is a cruel, cruel illness - for both the sufferer and possibly more the carers and family. Until the last year or so I had just no idea about how hard this carer's road would be to walk. I have siblings who think they understand but they don't and they can't, because at most they live with it for a week or 10 days at a time.

At the end of the day, some people are just better at dealing with this illness than others. Maybe some of your family will understand better in due course - they will be going through all sorts of emotions (including fear) and very possibly are still in denial. It's their mum after all, and maybe they just can't or don't want to accept it yet - even though I knew it was something more than old age, my sister refused to accept that until the actual diagnosis was given.

Whether or not her children sort themselves out, you sound like a natural carer and your Nan is lucky to have you in her corner, so stick with her.

I'm glad you have stopped by this forum. I'm not here all that often but sometimes it has really helped me just to be able to rant about my frustrations in a safe and rather anonymous place - and people give all sorts of comments that are helpful. Mostly, it's just SO GOOD to not feel completely cut off and alone.

God bless you, and your family, as you face whatever lies ahead.

G x
 
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misslouchar

New member
Aug 9, 2018
5
0
Any property is ignored in a financial assessment for home care so no charge will be put on her house. She will be self-funding if she has savings over £23,250, part-funding if she has between £14,250 and £23,250 and not paying at all if she has under £14,250 in the bank.
Thanks so much for this information, it's really helpful. Do you know if the same rules apply if she has to go into residential care at some point?
 

Distressed55

Registered User
May 13, 2018
67
0
Thanks so much for this information, it's really helpful. Do you know if the same rules apply if she has to go into residential care at some point?
At the time when she needs to go into residential care, then the value of the property will come in to the calculation. So if she has savings and the value of the house together are more than £23250, then she is self-funding.
 

misslouchar

New member
Aug 9, 2018
5
0
At the time when she needs to go into residential care, then the value of the property will come in to the calculation. So if she has savings and the value of the house together are more than £23250, then she is self-funding.
Thanks so much for your reply, I did think this would be the case.