Mum recently diagnosed with vascular dementia and alzheimer's

[Crownlyn]

Hello,
First time on this site and I am feeling quite scared.
My dad passed away aged 76 about 4 years ago with stomach cancer and between myself and my mum we cared for him (I am an only child). I noticed my mum struggled with his care but after he passed away she was okayish and we had some good times, although I knew something wasn't quite right. Then two weeks before lockdown her brother passed away suddenly with a heart attack. Lockdown followed and my mum got steadily worse with her memory and confusion. I was concerned so wrote to our GP and she was referred for a CT scan where she was diagnosed.
She currently lives alone in a bungalow that is far too big but has lived there for nearly 50 years, she is 86.
When we spoke with her consultant she acted as though she was fine but she is forgetting to take her medication (T2 diabetic, HBP, Thyroid) and even more worrying I think she is forgetting to eat. We are currently waiting for the NHS pre sorted dosette box.
She hasn't started the memory medication they prescribed as she is scared of the side effects.
I cleared her fridge and freezer yesterday and everything was out of date and she had got a lamb chop out to defrost and eat but it had obviously been out for some time!
However if I say anything she can be a bit stroppy and say bloody hell I'm alright. I have offered her to live with us, she refuses and we can probably convert the garage but again she is saying no.
How long can she live alone, especially when she thinks she is okay.
I am obviously worried as this is going to get worse. At the moment I cannot even think of a care home.
Is anyone else in the same position?
Thank you for reading x

 

[Grannie G]

Hello @Crownlyn Welcome.

Please don`t feel scared about posting on the forum. This is a safe place and your concerns will be respected.

The medication your mother needs is very important and I`m sure you don't need me to tell you this. Would it be possible to get someone in to give her medication to ensure she takes it regularly?

I would discuss as little as possible with your mother. The less you say the less she will be able to disagree with. I found with my mother, it was easier to do things without asking or telling and I did it as unobtrusively as possible.

If you could get someone in to offer her medication and perhaps make her a sandwich or heat some food for her it would take a lot of worry off your shoulders.

I hope the following link will be of help.

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

This is a very supportive community and I`m sure you will have lots of replies from others who will be able to share their similar experiences.

 

[Sarasa]

Hi @Crownlyn and a warm welcome from me too.
Do you have Lasting Power of Attorney to help manage your mum's affairs? If not I'd try to get that sorted. Although my mum refused to go to the memory clinic she did agree to POA, mainly because a friend told her it was a good idea. With POA you would be able to arrange for someone to come in to supervise medication etc. My mum didn't have any medication that was critical to her well-being but never got on with a dosette box, as by then her eyesight was too bad and the whole thing confused her too much.
Keep posting, you'll find lots of support here.

 

[Crownlyn]

Hi Grannie G
Thank you, I actually saw that piece of writing yesterday and printed it off. It will definitely help me try to understand what my mum is going through and how I should try and deal with it. It answers a lot of questions that I was going to post on here about whether I remind her that she forgot or just ignore it etc.

I just don't think my mum is ready for anyone going in to give her her medication and make a sandwich, she will say I can make my own sandwich, although she knows she's getting muddled with her meds. I will try the dosette box first but if that doesn't work out then I can look at someone or myself going in each morning.

Sarasa, when my dad passed away 4 years ago, one of his close friends suggested we should do a lasting power of attorney for mum so thankfully that is all in order.

Are there people that specialise in visiting to give medication or do I try and find a friend to do it?

Many thanks for your replies x

 

[Grannie G]

Are there people that specialise in visiting to give medication or do I try and find a friend to do it?

I`m not sure about this. I thought carers could give prescribed medication but was corrected on this forum and told it must be someone medical.

Family carers, partners and adult children are not medical but are allowed to give medication and I can`t see the difference.

It looks as if agency carers can offer prescribed medication following the correct guidelines.

Managing medicines: home care providers - Care Quality Commission

These are some of the key points from the NICE guidance about administration of medicines for adults in community settings.

www.cqc.org.uk

 

[try again]

My mum's carers give her all her meds now.
First step in power of attorney, attendance allowance, council tax rebate. My mother managed with a box for a short while, then we got echo shows to be able to drop in and when that no longer worked initially got carers twice a day. Due to incontinence and losing ability to do anything in the kitchen, this was increased to 3 then 4 times a day. Luckily this worked well when she had antibiotics to take . This week it's been increased to include a night visit as she was drenched in the morning and was refusing to go to bed for fear of messing it .
My advice is to not get too frazzled before you get social worker involved. I struggled with the accusations when trying to do my best for her and reached burn out 6 months ago - still haven't recovered. You can't be on empty while sorting out social workers etc. A good thing about getting them involved is that you can blame the carers on the doctor/social system. A cop out but anything for an easier life.

 

[canary]

Carers can give medication, but only from the packaging you get from the pharmacy (either the drug boxes, or dossette boxes made up by the pharmacy) that has got all instructions (what it is, when you give it and how much) plus the right name on the label on the box. They cannot give injections, or covert (ie hidden in food or drink) medication or drugs given "as and when". Family may be able to give this, but carers cant - it would require a qualified nurse.

 

[Crownlyn]

My mum's carers give her all her meds now.
First step in power of attorney, attendance allowance, council tax rebate. My mother managed with a box for a short while, then we got echo shows to be able to drop in and when that no longer worked initially got carers twice a day. Due to incontinence and losing ability to do anything in the kitchen, this was increased to 3 then 4 times a day. Luckily this worked well when she had antibiotics to take . This week it's been increased to include a night visit as she was drenched in the morning and was refusing to go to bed for fear of messing it .
My advice is to not get too frazzled before you get social worker involved. I struggled with the accusations when trying to do my best for her and reached burn out 6 months ago - still haven't recovered. You can't be on empty while sorting out social workers etc. A good thing about getting them involved is that you can blame the carers on the doctor/social system. A cop out but anything for an easier life.

 

[Crownlyn]

I suppose if the wrong meds are given someone will be in big trouble! I am hoping the dosette box will help before I need to think of the next step.
I didn't even know a social worker becomes involved - I obviously have a lot to learn about all of this in the coming months.....

 

[Jenny E]

@Crownlyn I understand your situation. My Mum has also had a mixed diagnosis. We found the dosette box was helpful but took Mum a while to understand it. We check if she’s on the right day. I’ve also found food hygiene and safety to be an issue. Both my parents have dementia and after what I suspected was food poisoning we have kept a close eye on the fridge. There were some specimens in there well past their date or not wrapped safely. Mum was a fantastic cook until 2020 and up until recently she used to make them ham or chicken baps each day but we now buy prepared sandwiches from the shop with a good long use by date every 2 days or so. Mum can open those and she cuts them into triangles and displays them nicely on the plate. I like that she still goes to that trouble to present the food. At least we know the food is safe. I hope that tip might help ( although they don’t like most of the fillings! So we have to search for chicken salad or chicken & bacon). We looked into a garage conversion but the cost was just too much. We are trying to persuade my parents to accept carers calling each day ….. it’s not easy … but we are keeping at it.

 

[Tilly13]

Hello @Crownlyn
My parents Dad with Alz Mum with a mixed diagnosis were able to use the oven and microwave after I wrote instructions on the controls. They were unable to prepare or remember how to cook veg so we moved onto high quality ready meals and desserts.They needed the independence of providing food for themselves. I was putting written cooking instructions on every packet ( large writing / yellow card ). Mum could prepare a simple sandwich and make a cup of tea.
They had meds in the chemist supplied boxes and all was ok.

But gradually they were forgetting how to operate the oven ( telling me it was broken ), then I found meals were not being eaten but they were going through breakfast cereal at a rate of knots !
There was trouble with their medications , Mum would continually phone me very anxious and distressed about Dad not taking his tablets, they couldn't work out what day it was and so sometimes none were taken and sometimes 2 days were gone ( but had they had them ??) My Dad started to line up his days tablets on the table and take over an hour to actually take them causing my Mum even more distress.

So at this stage we started to talk about a 'friend ' I knew coming to help with hoovering . Mum was very houseproud and always liked to hoover so I knew it could be a positive response.
It was slowly accepted and we started having Carers in twice a day for meds ( dosette
box had to be hidden ) and evening meal help. No personal care until trust was gained and my Mum was always unhappy with the Carers but accepted the help. She really hated my Dad needing personal care and would always go to be with him in the bathroom.
The Agency were excellent and had a team of 4 Carers for my parents. Always treated Mum and Dad with respect.
Mum always referred to them as my friends.
It wasn't always straightforward and Mum chucked them out a few times or refused to let them in!

I hold POA , my parents are self funding and we never had Social Worker or Social Services involvement.
I increased Carers visits as my parents needed more support until 2 years ago visits 4 x a day were not enough to keep them safe ( wandering- together or alone and being brought home by Carers and neighbours / not recognising home of 40+ years / very scared at night /people in the house, increasing number of distressed phone calls )

My parents live together in a Care Home now where they are well cared for and safe. As the Dementia progresses I know it was the right thing for them ( again as self funding/POA so along with my close family no involvement from Social Services ).

 

[Lorraine22]

My Mum is in a similar situation. I actually put her tablets in a dosette box I bought on Amazon which is very boldly marked with each day. We also bought her a large clock that clearly and boldly shows the day and stands on the side in her kitchen and the dosette box is in front of that and she has said it really helps her remember which days tablets she needs to take. It seems to work really well.
She was also not able to cook for herself so we have a carer go in every lunchtime to prepare a meal for her and leave a snack for later

 

[JoannePat]

Hi, I do my dads drug box every week (we don't have access to NHS dosette boxes/blister packs). I have found Alexa a really good reminder. Every morning she tells him to take his tablets, she tells him to drink more liquids during the day and she tells him to take his evening tablets. It has worked well so far, but we are just reaching the stage where he doesn't understand that if he has already remembered to take them, she will still remind him.

Its also a good telephone system if the PWD has a fall or can't get to the phone "Alexa call Joanne" and comes straight to my phone or my device at home.

Joanne x