Understanding the Stages

[ConfusedBiker]

Hi there

I recently moved back home to help care for my mum. Until I read this forum I had no idea about the 'stages' but it kind of makes sense as mum has vascular dementia where she seems to get worse, then levels off a little, then gets worse and so on.

Mum was first diagnosed around 4 years ago but has now reached the point where she is unable to do anything for herself.

I need to get her up in the morning, take her to the loo, change her nappy and clothes then help her walk to the kitchen for breakfast where she can only really manage food that is of high liquid content due to not being able to swallow dry food. Her walking is more of a shuffle and she in very unsteady on her feet. After breakfast I help her to the lounge where she can sit with dad and watch telly but she will often fall asleep and sometimes it is difficult to tell if she is still breathing.

Mum is unable to communicate effectively; when she does speak it is just a string of random words.

I smile at mum and kiss her good night and encourage her when we need to walk somewhere or try to eat something and tell her everything is okay but I don't really know if she understands, she seems like a baby where she just looks at me blankly.

I have read other posts on here that mention quality of life and dignity but I honestly don't think mum has the capacity to think about either.

Dad went back into hospital yesterday with endocarditis and I am not sure if he'll com back out - he is 86 and had it before about 3 years ago when he was in for 6 weeks. He had a triple heart bypass and has an artificial valve so I don't think they'll operate on him again.

It seems to me that mum is in the later stages of the disease, it is all manageable at the moment, but will things get worse or will I just find that mum doesn't wake up one morning?

Sadly

A

 

[DollyBird16]

@ConfusedBiker
Hi, so sorry to read about your Mum and Dad.
You are doing a most wonderful job caring for both Mum and Dad.
My Mum has vascular dementia too.
I just wanted you to know I’d read your post and you are not alone. From reading on the this forum, the way you describe your Mums they are expected behaviour for vascular.
I’m pretty sure someone with more knowledge than I will be able provide additional insight.
Take care of you. X

 

[anita1780]

Hi confused biker , mum had vascular dementia too , she is unable to do most things more herself ,maybe you can talk to her doctor to see what to expect, hope your dad comes back from hospital , sending you hugs

 

[margherita]

Hi there

I recently moved back home to help care for my mum. Until I read this forum I had no idea about the 'stages' but it kind of makes sense as mum has vascular dementia where she seems to get worse, then levels off a little, then gets worse and so on.

Mum was first diagnosed around 4 years ago but has now reached the point where she is unable to do anything for herself.

I need to get her up in the morning, take her to the loo, change her nappy and clothes then help her walk to the kitchen for breakfast where she can only really manage food that is of high liquid content due to not being able to swallow dry food. Her walking is more of a shuffle and she in very unsteady on her feet. After breakfast I help her to the lounge where she can sit with dad and watch telly but she will often fall asleep and sometimes it is difficult to tell if she is still breathing.

Mum is unable to communicate effectively; when she does speak it is just a string of random words.

I smile at mum and kiss her good night and encourage hto walk somewhere or try to eat something and tell her everything is okay but I don't really know if she understands, she seems like a baby where she just looks at me blankly.

I have read other posts on here that mention quality of life and dignity but I honestly don't think mum has the capacity to think about either.

Dad went back into hospital yesterday with endocarditis and I am not sure if he'll com back out - he is 86 and had it before about 3 years ago when he was in for 6 weeks. He had a triple heart bypass and has an valve so I don't think

It seems to me that mum is in the later stages of the disease, it is all manageable at the mombut will things get worse or will I just find tha

 

[Shedrech]

hello @ConfusedBiker
I think reading around the threads here will give you some ideas, and having a look at the info on the main AS site too - press the blue 'Alzheimer's Society' button extreme top right of this page
each person presents individually in a mix of the 'stages' so it's not easy to say what's coming next
this link may give some ideas
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

you have a lot to deal with - do you have some help? - your mum has a right to an assessment of her care needs; contact her Local Authority Adult Services and explain that her husband has had to go in to hospital - home care visits will give you both some support, plus maybe a sitter/befriender to give you some hours off
you also have a right to a carer's assessment
and regarding finances - I hope your mum is in receipt of Attendance Allowance, which means her carer becomes eligible for Carer's Allowance - if you are now the main carer for both your parents, make sure you apply as it covers NI contributions which are significant in contributing to your own future state pension

 

[ConfusedBiker]

hello @ConfusedBiker
I think reading around the threads here will give you some ideas, and having a look at the info on the main AS site too - press the blue 'Alzheimer's Society' button extreme top right of this page
each person presents individually in a mix of the 'stages' so it's not easy to say what's coming next
this link may give some ideas

you have a lot to deal with - do you have some help? - your mum has a right to an assessment of her care needs; contact her Local Authority Adult Services and explain that her husband has had to go in to hospital - home care visits will give you both some support, plus maybe a sitter/befriender to give you some hours off
you also have a right to a carer's assessment
and regarding finances - I hope your mum is in receipt of Attendance Allowance, which means her carer becomes eligible for Carer's Allowance - if you are now the main carer for both your parents, make sure you apply as it covers NI contributions which are significant in contributing to your own future state pension

Hi and thanks for your reply.

I have help in my sister and Linda who is the lady that was helping my dad look after mum before I got here. Mum last had an assessment early this year, so due another. I will contact the L.A.A.S as you suggest, thanks.
I don't know what Attendance Allowance is, but I'll do some research.

A

 

[ConfusedBiker]

Had an hectic morning - I went to wake mum at 7am and there was what looked like blood all over her pillow and neck and bedding. I called an ambulance and realised before they arrived it was because mum had thrown up during the night, this has not happened before. I am sure the main content was blood but when the paras arrived they said she seemed fine and since I had already cleaned up by then I wasn't able to show them a sample of the 'elimination'

Mum has been sleeping all morning and I am unable to get her to eat anything more than some mashed banana and dairy free yoghurt which she had for breakfast. She has had her meds and water though.

Linda has been ill the last few days and the hospital said dad also had pneumonia, I am now worried mum might have contracted something but the paras said she was okay.

I've been told by the GP just to keep an eye on mum and call them if she gets worse, I have also been told to consider a TEP, Treatment Escalation Plan, which is pretty brutal.

 

[Shedrech]

hi @ConfusedBiker
what a worry
I'm glad the paramedics checked your mum over - call for help if you are at all concerned about her
for you to look at later, here are some links about Attendance Allowance etc
https://www.gov.uk/attendance-allowance/how-to-claim
https://www.gov.uk/carers-allowance
https://www.gov.uk/government/collections/lasting-power-of-attorney-forms
https://www.gov.uk/government/publications/deputy-guidance-how-to-carry-out-your-duties

 

[Amy in the US]

I'm sure the UK experts can better advise about Attendance Allowance, Carers Allowance, the council tax reduction, and other financial assistance your mum/parents may be entitled to. I think in some locations you can also get some supplies through the Incontinence Nurse. It all helps.

You mentioned your mum has trouble with "dry" foods. Have you had a recent assessment from the SALT team or nurse, in your area? They may be able to give you updated information on how her swallow function is (or isn't) working and food/nutrition suggestions. I think you get a referral from the GP but others here will know.

I'm also sorry to hear your dad is poorly. It must be very stressful for you and I wonder if you could increase the help you get.

Very best wishes to you.

 

[Beate]

Here is the link for the Attendance Allowance application. You can ask Age UK etc to help you fill it in:
https://www.gov.uk/attendance-allowance

 

[ConfusedBiker]

Thanks for all your replies...

Mum seemed quite distressed when I put her to bed tonight, she's also been really shaky all day, both are unusual. Has anyone else experienced this?

 

[ConfusedBiker]

I'm really starting to struggle...

Dad went back into hospital on Monday following a massive stroke. He was left severely brain damaged so it was agreed to stop fluids and antibiotics and setup a morphine driver to give him comfort. I said my goodbyes on Wednesday thinking it would be his last day but he's still hanging on and it is killing me.

We've been told by the nurses that he isn't conscious, very comfortable but no change otherwise. I need to be at home to look after mum as I couldn't take her to the hospital for a few reasons.

I spend my days trying to focus on other things like mum, a bit of cooking or trying just to watch mindless TV.

I feel sick and empty and I'm crying randomly, I really wish it could be over

Sleep is a problem as when I wake up I call the hospital to see how he's doing, is there anything I can do that'll make things easier?

 

[canary]

Hello @ConfusedBiker Im sorry to hear about your dad.
When mum got to this stage I was amazed at how long she was able to survive without food and fluid. Its a strange stage when you dont seem to be able to do anything other than wait. I think everyone going through that stage wants it to be all over.

Although your dad in not conscious he may still be able to hear (it is the last thing to go) so when you visit play his favourite music and talk or read to him. I put moisturiser on mums face and arms as her skin became so dry and I put vasaline on her lips. I was also given a little brush so that I could moisten her tongue. Is there anyone who could sit with your mum for a couple of hours so that you can be with your dad?

 

[canary]

Posted twice

 

[ConfusedBiker]

Hello @ConfusedBiker Im sorry to hear about your dad.
When mum got to this stage I was amazed at how long she was able to survive without food and fluid. Its a strange stage when you dont seem to be able to do anything other than wait. I think everyone going through that stage wants it to be all over.

Although your dad in not conscious he may still be able to hear (it is the last thing to go) so when you visit play his favourite music and talk or read to him. I put moisturiser on mums face and arms as her skin became so dry and I put vasaline on her lips. I was also given a little brush so that I could moisten her tongue. Is there anyone who could sit with your mum for a couple of hours so that you can be with your dad?

Oh god, now I feel terrible... the doctor said that there was no evidence to show that dad would be able to hear or understand us once he was at this stage, but you he can still hear us?

My girlfriend is coming down to visit tonight, she would be happy to sit with mum for a couple of hours while I drive to the hospital...

He looked really sick when I saw him on Wednesday - eyes half closed breathing was raspy and mouth was just open, the only movement was his right hand (good side following the stroke) which we were told was involuntary. I hate to think how he looks now, I know it sounds bad but I don't know if I can see him like that if he wouldn't know I was there, or am I being selfish?

 

[canary]

Oh god, now I feel terrible... the doctor said that there was no evidence to show that dad would be able to hear or understand us once he was at this stage, but you he can still hear us?

I only said he might be able to. When mum was at that stage and on a syringe driver I was told that she would still be able to hear me - it might not be the same for your dad. I just thought that maybe playing music could be something you might like to do just in case.

Please dont feel guilty whatever you decide to do. You have said your goodbyes and you can only do what you can do. I suggested a couple of things to do if you do decide to visit, but please dont feel you have to.

 

[Spamar]

Hearing is the last sense to go. Certainly OH was responding, though not verbally, of course, to his dau and my chatting in his last hours. Just talk nonsense, if necessary. But if you don’t want to go, that’s fine. Everybody is different. We weren’t there when OH died (03:00) but many die when you’ve just popped out for a cuppa, or similar.

 

[Prudence9]

I'm so sorry @ConfusedBiker, what a horrible situation to be in, it's difficult enough when one person needs you, how you split yourself in to two I have no idea...

If your girlfriend can come with a view to staying with your Mum then see how you feel as the minutes go by.
You may suddenly want to go and then just talk to him anyway and tell him everything with Mum will be fine.

If you don't want to go then please don't feel guilty. Your Dad will know you're with your Mum and that may make him content and calm.

You are only one person, you can't be in two places at once.

Sending love and strength to you for the days ahead xxx

 

[Kikki21]

I’m just sending you strength for you, your Dad & your mum.
I know exactly what you mean about being there or not being there for your Dad. I was there when my Dad passed over & it really didn’t give me a lot of comfort other than it was peaceful but I’m not sure I would like to repeat the experience with my mum. It really is a very personal decision that only you can make.

You definitely sound like you could do with some additional caring help with your mum so I would definitely chase up the social services assessment for your mum.

 

[Lmh1977]

Just wanted to offer you a kind word and say that you and your parents are in my thoughts. I'm so sorry you are going through this heart breaking time.