Being A Carer For Someone.

[floydraser]

I thought I would start a thread with this title so it may benefit others and equally help those who may wish to avoid the subject.

It seems there are a few of us who are either going through or have recently been through the emotional mill which is caring for someone. I thought it may help to have somewhere to pool our experiences so that others could glean some ideas. I know every case is different but there's always similarities. I'll not be offended in the slightest if someone has an alternative view.

There are five main things which come straight to mind when I think of what helped us most: Power of attorney, attendance allowance, private carers, frozen meals and a “dementia” clock.

Dementia clock has a large display and can be set to give an alarm and a voice (your own if you want) can say something like “time to take your medication”. They're about £30ish or could be available through a charity.

Frozen meals: we bought an upright freezer for MILs house and we had a lot of small freezer boxes labelled “main meal xxxx” or “vegs”. These were prepared so all she had to do was take out what she fancied and microwave it.

Attendance allowance: Search online, not means tested, through Social Services in England but Wales may be different? Goes to the patient not the carer.

Private carers: MIL had too much in the bank so didn't qualify for Social Services carers. Probably just as well because when they knew we had carers going in a lot of people asked us how they were. Ours were perfect and we couldn't have wished for better. Unfortunately, we heard in return, that a lot of Social Services carers (although lovely people) were unreliable in that they turned up at varying times and you didn't always get the same people.

Back before Covid MIL and FIL were getting on in years. They had four daughters, three living locally and we went every weekend to see them. FIL struggled with mobility and MIL had a couple of mini strokes which were diagnosed as vascular dementia. We locked them in during Covid, taking food to the door and leaving it in the porch. FIL passed away in November 2020 so we set up a rota of visiting. MIL's condition deteriorated very slowly over the next two and a half years but slowly she needed more and more attention which became a bit much while we were working. We started the private carers for an hour a day at first, making sure she'd taken her meds, a drink and putting her to bed. She accepted this gladly as it was reassurance that we were not going to put her in a home. Then the same carer came in the morning for an hour to get her up. Then lunchtime.

When she became unable to get out of bed the doctor was able to arrange the loan of a top of the range hospital bed which was set up in the lounge.

I hope some of this helps.

[floydraser]

Forgot to add: We count ourselves lucky that MIL was able to recognise who we were up to the end. She was always pleasant to everyone she saw and always said "Thank you" as they left. All of us were always pleasant with the carers and professionals who visited and we think this contributed to the good service we got from them.

[Troyboy]

Thanks for posting this up floydraser. I'm sure there is a wealth of experience and knowledge available for those of us that may need it. It takes courage to speak about such things.

[YnysMon]

Thanks so much for starting this thread. It does help when your relative still has their marbles and is able to thank their carers. All my Mam’s carers expressed how they loved how appreciative she was. 

My Mam didn’t have that much in the bank so qualified for social care, and I must say that she couldn’t have had better care. It was a private company  paid by social care, headed by a lovely African lady. When she first visited, Mam asked what her name was…it was ‘Mercy’. ‘How apt’ said Mam.

I emailed my father in law’s Dr yesterday, and got a call from the Dr today. Dr Raj had visited Dad today, so that was good to know. Although Dad allowed him in, he wouldn’t let him test his blood pressure etc. so the Dr is going to arrange for a nurse to visit. Sometimes the NHS comes up trumps.  It’s not perfect, but they are mostly doing a good job under difficult circumstances.

[Chelsea14Ian]

I've nothing  but admiration for the NHS.Sadly in the last three years,I've had lots of treatment. They have been kind ,understanding  and first class treatment .

[floydraser]

2 hours ago, YnysMon said:

Thanks so much for starting this thread. It does help when your relative still has their marbles and is able to thank their carers. All my Mam’s carers expressed how they loved how appreciative she was. 

My Mam didn’t have that much in the bank so qualified for social care, and I must say that she couldn’t have had better care. It was a private company  paid by social care, headed by a lovely African lady. When she first visited, Mam asked what her name was…it was ‘Mercy’. ‘How apt’ said Mam.

I emailed my father in law’s Dr yesterday, and got a call from the Dr today. Dr Raj had visited Dad today, so that was good to know. Although Dad allowed him in, he wouldn’t let him test his blood pressure etc. so the Dr is going to arrange for a nurse to visit. Sometimes the NHS comes up trumps.  It’s not perfect, but they are mostly doing a good job under difficult circumstances.

Our carers were all African too including the owners of the company. Nothing was too much for them and they all went the extra mile. The neighbours said they could set their watches by the puncuality of them! The neighbours also asked for contact details just in case.

[JanetAnne]

Put an Alexa on the list. Medication reminders, turning lights and the telly on and off etc etc. Plus the ability to 'drop in' and have a conversation without someone needing to find a phone or get up 

 

 

[Graham47]

2 hours ago, JanetAnne said:

Put an Alexa on the list. Medication reminders, turning lights and the telly on and off etc etc. Plus the ability to 'drop in' and have a conversation without someone needing to find a phone or get up 

 

 

Alexa ‘drop in’ is excellent. Barbara has a life long friend who has Alzheimer’s and she phones her every night. Recently her friend has had problems finding / answering the phone and the fact that she has Alexa has made it so much easier for a chat using ‘drop in’ at any time without her friend having to find and pick up and answer the phone.

[Gracie]

My parents are no way in a situation that Helen and her family find themselves in and what many of you are going through

As you probably know my dad is an amputee and has been diagnosed with Parkinson's. My mum is his carer, I do whatever I can to ease their load. The hardest thing for my mum is seeing the strong, confident man she married becoming unable to care for himself. She is not getting any younger so things are difficult for her too both physically and emotionally. This topic will be extremely helpful

Thank you for starting this thread x

 

[Chelsea14Ian]

Gracie  by as I'm sure you do.Giving your parents  support  will help no end.Perhaps a little surprise  now and again.A card, flowers or some of your chocolates.

[Gracie]

2 minutes ago, Chelsea14Ian said:

Gracie  by as I'm sure you do.Giving your parents  support  will help no end.Perhaps a little surprise  now and again.A card, flowers or some of your chocolates.

I'm with you all the way there Ian but I came out in a cold sweat as I read your post thinking you might advise me to give them some of my wine  x

[Chelsea14Ian]

Well you could.Sure a little nip would help.

[floydraser]

11 hours ago, JanetAnne said:

Put an Alexa on the list. Medication reminders, turning lights and the telly on and off etc etc. Plus the ability to 'drop in' and have a conversation without someone needing to find a phone or get up 

Sense of humour alert: I've tried this on Mrs raser so it's ok 

Our Alexa randomly answers questions which nobody asked. I'm not sure how someone with dementia would cope with "The capital of Portugal is Lisbon. Population...." suddenly coming from nowhere.

But back to seriousness: MIL was not computer savvy at all and wouldn't have coped with it. Athough I guess it's partly a generation thing. An ex colleague of mine, a dear old lady who knew me as an apprentice, used to keep in touch with the World via her laptop. As I said at the top, every case is different.

[floydraser]

And another thing: at the top I said there were five things, there's more. This was a God send:

https://www.amazon.co.uk/Amplicomms-Amplified-Telephone-Programmable-Buttons/dp/B06XSLHMZC/ref=sr_1_11?crid=3ETQTZMDB3TQM&keywords=big+button+phone&qid=1701855083&sprefix=big+button+phone%2Caps%2C79&sr=8-11

Programmed with the correct numbers you just press the photo of whoever you want to call. Different makes available, we didn't have this one so this isn't a recommendation.

We did get one of these though and I can recommend it:

https://www.amazon.co.uk/Breville-HotCup-Dispenser-Variable-Dispense/dp/B002NGNRHC/ref=sr_1_3?crid=1NKQ8JIZNSHWR&keywords=breville+water+heater&qid=1701855293&sprefix=breville+water+heater%2Caps%2C77&sr=8-3

Preset the cup size and you get just the amount you need straight away. Just have to top it up every so often.

[Arthur]

Thanks for sharing your experience.

I cared for my mother for a long time as her dementia worsened.

It was reallly painfull when I was simply unable to cope any more and she had to go into a nursing home.

Still visit her very regularly although much of the time she does not seem to know who we are.

I really admire the way the staff at the home care for her though.   Much better than I could manage the way she is now.

She is 92 now and incredibly frail and unable to get out of bed.

 

[Dan]

Thanks for posting this

I think this does effect or touch so many people it's good to raise and swap ideas

My Dad has mid to late stage alzheimers, a few things that we have found that have helped that haven't been mentioned (or not of the exact same style/features) that helped us

Digital Timer Dispenser... one of us fills this up once a week and then it bleeps when its time to take the tablets and opens the window on the ones to be taken.  This has been brilliant as the timings just couldn't be remembered/followed unless we were there.  This is the one we got  https://www.alzproducts.co.uk/pivotell-advance-automatic-pill-dispenser

Dementia Clock... I know discussed but ours has the date, day of the week, year, as none of this stuff was known and using the calendar if a day didn't get crossed off etc was causing havoc... so this gives it all if needs checking, like this one https://www.alzproducts.co.uk/dayclox-3-in-1

We did try a phone that had picture buttons of who you wanted to call, but although good in theory, in practice it was very fussy about which order things were done, when you picked the handset up etc and both me and my sister's struggled with it so really Dad just couldn't have used it!  Be interested to hear if anyone else has found an easy one of these

Putting what to wear out on the bed.  Getting dressed apparently is a common difficulty, and Dad was often layering clothes (a common thing I think), but always with a good excuse, well I don't want to be cold, etc!  With them out all the difficulty and confusion seems to go and he just puts them on.

The actual diagnosis itself helped massively, because particularly when it was a little less advanced, and having always been a bit difficult at times shall we say, sometimes it was like is something wrong or is it just old age exagerating personality/behavioural traits (which whether controversial or not I do believe happens).

Dan

[Dan]

13 hours ago, floydraser said:

And another thing: at the top I said there were five things, there's more. This was a God send:

https://www.amazon.co.uk/Amplicomms-Amplified-Telephone-Programmable-Buttons/dp/B06XSLHMZC/ref=sr_1_11?crid=3ETQTZMDB3TQM&keywords=big+button+phone&qid=1701855083&sprefix=big+button+phone%2Caps%2C79&sr=8-11

Programmed with the correct numbers you just press the photo of whoever you want to call. Different makes available, we didn't have this one so this isn't a recommendation.

We did get one of these though and I can recommend it:

https://www.amazon.co.uk/Breville-HotCup-Dispenser-Variable-Dispense/dp/B002NGNRHC/ref=sr_1_3?crid=1NKQ8JIZNSHWR&keywords=breville+water+heater&qid=1701855293&sprefix=breville+water+heater%2Caps%2C77&sr=8-3

Preset the cup size and you get just the amount you need straight away. Just have to top it up every so often.

Somehow missed... good to see you found that phone OK.  I did think a corded (over cordless like we got) might be simpler.  One of my worries is if Mum was unwell and he was the person raising the alarm could he, but if we put that as the main phone it is less convenient than what they have.  Will give some thought, cheers for sharing

[Dan]

Also, unless it is regional, a letter from the doctor sent to the council resulted in a reduction in Council Tax

[floydraser]

We didn't see the automatic pill dispenser. We managed with the box type like this: https://www.amazon.co.uk/JFA-Medical-Organiser-Supplements-compartments/dp/B0818FSVKX/ref=asc_df_B0818FSVKX/?tag=&linkCode=df0&hvadid=394276556622&hvpos=&hvnetw=g&hvrand=13929155728499493874&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1006867&hvtargid=pla-839594556387&mcid=ac9ae9c8d2b636d4896523a7eba7f8dd&ref=&adgrpid=84524269169&th=1

Although she did forget once or twice it was never a bother.

[grendel]

with  my parents both  now into their 90's, (fortunately both are still fully in their senses, but both now suffer mobility issues,) yet my dad still insists on going shopping, it now takes both myself and my sister to shepherd him around, so I go over once a fortnight and we do all the heavy shopping (he still pops the few hundred yards to the local tesco express). he is unsteady on his legs and has to have the shopping trolley to get around the shop. mum doesnt go out any more, but can get around the house and get upstairs. so really I am quite lucky as the shopping is my only carer duties, my sister lives just around the corner so is called upon for more immediate concerns (like if one of my parents has a fall, she can pop round and help pick them up.

everyone seems to be helping find them mobility aids, I recently found a 3 wheel folding stroller, and when I arrived found they had already been given one (they now have one each and dad prefers the bag on the one I got for popping to the shop when he has  to get a bottle of milk.

either way both the family and the royal naval association friends of his keep an eye out for them and keep them well supported.

[NeilB]

9 hours ago, Dan said:

The actual diagnosis itself helped massively, because particularly when it was a little less advanced, and having always been a bit difficult at times shall we say, sometimes it was like is something wrong or is it just old age exagerating personality/behavioural traits (which whether controversial or not I do believe happens).

Dan

My mum was never diagnosed but I wonder if she was in the early stages of dementia in her last couple of years.  Never one to suffer fools, ( I know, I know she suffered me!!), she became a lot more vocal and I often had to have a word with her.  She spent 10 years living alone after dad passed so struggled in the care home after her 2 friends there had passed on.  One chap kept falling asleep and snoring, she struggled out of her chair once or twice but resorted to launching balls of cotton wool soaked in water to wake him up.  Despite being blind in 1 eye and partially sighted in the other her aim was pretty good!! 

Even the home manager struggled to keep a straight face when she asked me to have a word with mum!

[floydraser]

Wheeled mobility aids are quite cheap at auctions, I bought two for a tenner! We ended up with two of the four wheelers which you can turn around and sit on, one for indoors and one for outside. 

I've also got a three wheeler but they didn't like it so it now sits on the deck of the Denham Owl to prop up the cover!

[floydraser]

1 hour ago, grendel said:

everyone seems to be helping find them mobility aids, I recently found a 3 wheel folding stroller, and when I arrived found they had already been given one (they now have one each and dad prefers the bag on the one I got for popping to the shop when he has  to get a bottle of milk.

either way both the family and the royal naval association friends of his keep an eye out for them and keep them well supported.

They must be nice people.

[YnysMon]

15 hours ago, Dan said:

wrong or is it just old age exagerating personality/behavioural traits (which whether controversial or not I do believe happens)

One of the things that drives Graham and I bonkers is that his Dad always has a glib answer to everything. Nothing is ever his fault. We think you are right about old age exaggerating personality traits. 

[addicted]

When my father developed Alzheimer's he became the opposite of what he had been. From being a fairly quiet man he became outrageous. And while in the care home in which he spent his final years was removed from the lounge one day while a visiting choir gave a Carol concert because he insisted on singing rude words to the carols at the top of his voice. The staff were not annoyed with him they thought him hilarious.

 

Carole