Relative With Dementia

[Barquentine]

Can anyone advise what options might be available to us? My wife is caring for her mother (who has mixed vascular dementia and Alzheimer's) six days a week. Luckily her mother only lives about a ten minute drive from us, but my wife gets to spend just one day (Saturday afternoon to Sunday afternoon) with me, (My wife's sister will only look after her mother one day a week). My wife has a full-time job (nominally 4 days + 1 day off a week - but in practice she does 5 days' worth of work). Thankfully her employer is very helpful and allows her to work entirely remotely. She is very well regarded by her employer due to her very conscientious work, her reliability and her always going the extra miles to deliver on time. Mother-in-law owns her house so she could afford to fund private care - either visiting or a care home - except - my wife does not want her mother to go into a care home and her mother gets stressed by strangers visiting her house. Can anyone think of a way out of this Catch-22 conundrum? Since M-i-L is lucky enough to be able to afford care, I try to argue my wife should not be putting herself under such a burden - she can rarely leave her mother alone so is stuck indoors with her all week. I can foresee this wearing my wife down until she can no longer endure the tedium (my wife does not see things this way). But neither of them will consider private care and I cannot think of anything else. There must be an answer somewhere - which is why I am now turning to The AnswerBank. Any ideas anyone has would be very gratefully received. Thank you in anticipation.

[DTCwordfan]

Been there done that and written a book on it - my mother has alzheimers, am I going mad - and supported by the Ed as to the value it offers.

How about a live in to help alleviate the situation, allowing for breaks and respite- but to be frank, there will come a point where she will need to go into a home. On this, define your boundaries - in my case, there were two fundamental ones - aggression/violence where I felt threatened and personal hygiene - the excretia on the floor I could handle as no worse than a dog but the hands inside the Tena and having to clean them, under her finger nails, was truly gross. One other thing, I didn't take enough respite and it was seriously debilitating and financially damaging.

[DTCwordfan]

if you need deeper support let me know and I'll give you a throw-away e-mail or let me have one of your own.

[Barquentine]

Thank you DTCWordfan - just Googled your book and will be buying a copy immediately. I will read it then pass it to my wife. I suspected at some point a home would be unavoidable. If the cost eats up the entire value of M-i-L's house it will serve sister-in-law right since that was her inheritance, my wife already having inherited her Dad's house. My next question I will post will be how to find a care home one can trust. I do not trust anyone at all and would insist on a live CCTV feed due to some of the documentaries I have viewed over the last 50 years. If they do not allow 24 hour monitoring no care home will be suitable.

[zylaphone]

My mother had dementia. She lived alone after my father died. We got carers in for a while. Clearly she couldn’t cope. I live many miles away as my sister. Brother lived locally to her. We told her a white lie that my brother will be away for a week and she could go into a lovely residential home . She did.

She came home for one night and told us that she didn’t to live there anymore, so she happily spent her life in the home

[DTCwordfan]

CCTV is a bit OTT - such incidents are the exception.

In our case, I was th VP of Ops and my eldest sister, VP of admin - partly to keep us kosher as to the other two. My eldest sister did the research down here and from ten candidates, it came down to really just one. My middle sis, who worked as a carer, came down and screened the home and was impressed. To us, it wasn't too large, personal in attention, creative on the side and on the way up in the ratings. she's been there 3 years now and is seriously advanced - seeing her tomorrow, yet I never know what to expect - sleeping, foul mood/good mood, who knows?!

[Hazlinny]

DTC has said it all. Is there a nice private Care Home near you? I have seen someone (similar to your m-i-l) who quite quickly settled into a Home and, in fact, probably forgot about her own house. I see your wife is not keen on this idea but, believe me, her own health and mental well-being will suffer eventually. Alternatively, could your wife not work alongside a private carer for a month or so until m-i-l sees the carer as part of the furniture and does not get distressed?

[Stableford]

I live with a close relative who has Alzheimers and would suggest a very helpful place to start is with alzheimers.co.uk and your local council. There is a lot of help available but it can take time to assess and to access, so the earlier you start, the better. I feel for you, it can feel like a cruel disease at times, but take courage, thousands of us live with those who have this disease daily, and there is help available.

[DTCwordfan]

zylaphone's situation was the same as ours to transition....I claimed 'respite' which was partly true..and she went in with absolutely no hassle at all when it came to the moving out - actually the part-time carer we had, 3 hours a day for 5 days a week, nearly gave the game away as she dissolved into a flood of tears.

[DTCwordfan]

As stableford says, planning ahead is essential - and having an idea of how the symptoms can play out. You'll never be one hundred percent as they can still surprise you, but at 80/90 percent, you are ahead of the game....for example, knowing that they may forget your name - and eventually you. It doesn't happen to all but if you know that this can happen, at least you are part-prepared. The game is about becoming thick-skinned, rational, less emotional and phlegmatic. sorry to be blunt.

[-SharonA-]

Dtc what is your book called? I am very interested in reading it.

[Stableford]

Excellent advice from DTC as above. I will read your book, presuming it is still available?

[Hazlinny]

2117/ My friend visited several Care Homes in his search to find one where his wife would be well looked after ... he said he visited "unannounced" and not at regular visiting hours so that he could see the place and staff in a situation which had not been "prepared" beforehand. Eventually found a lovely place at Bexhill-on-Sea.

[DTCwordfan]

Only on line..... Amazon.com User Recommendation#:~:text='My%20Mother%20Has%20Alzheimer's%20%E2%80%93%20Am,lonely%20and%20very%20challenging%20indeed.

My eldest sister painted the portrait of the Mater on the cover and won the Falmouth Art Prize for her painting.

[Rosetta]

re care homes, is there anyone you know that can give a personal recommendation. You will need to visit several , preferably now rather than when any crisis occurs which necessitates having to take what is available.Personally I doubt anywhere would agree to 24hr cctv surveillance, partly because it would infringe your MIL right to privacy and secondly inevitably you need to be able to build up trust with the home.
Your MIL might be more accepting of care in her own home, if the number of people coming in would be reduced, which can be a disadvantage if having an agency care package. Have a word with your local Social Services Dept, and Age uk might be able to offer some advice

[DTCwordfan]

Amazon.com User Recommendation#:~:text='My%20Mother%20Has%20Alzheimer's%20%E2%80%93%20Am,lonely%20and%20very%20challenging%20indeed.

[DTCwordfan]

another try...

Amazon.co.uk User Recommendation

[Barquentine]

DTC - very impressive - not only a whole book about this subject, but a talented sister too! First thing that struck me when I Googled your book was what a superb picture the book cover has. It captures everything - you can see she isn't well, but at the same time you can see she is still there and who she once was - her eyes show recognition and a mischievous, knowing look - yet her bowed head tells us all is not well. Utterly superb portrait. One thing my wife will not try without the psychiatrists' approval is my idea to experiment with M.I.T's research into gamma-frequency (40Hz) brainwave entrainment which has shown positive results (not only slowing progress of amyloid-beta plaques and tau-tangles, but even reversing them) ..in mice. I know it is not relevant to vascular dementia, but if it's good for mice with A.D. then it might work for mother-in-law, who has mixed vascular & A.D! My wife won't approve 40Hz isochronic tones playing or special table-lamps that flicker at 40Hz (available online). It is going to be irritating if this new approach is one day proved to work & we never tried it. I wonder if there might be a subliminal method of applying this brainwave entrainment to MiL. I found an app with a variety of games you can play on your phone which simultaneously flickers at and plays 40Hz isochronic tones - but it's a bit obvious and the wife would spot it a mile away. I know there are YouTube videos that overlay soothing music onto entrainment isochronic tones (binaural won't help since they need headphones). But MIT found that the light-flicker had a stronger effect. Their research on this began in 2016 so I must go and Google if they have made any more progress since then. If I do find anything I will add it here. Thanks Hazlinny for your idea - I may run that past my wife - that might possibly work. MiL already thinks there are two or three 'ladies' looking after her. My wife plus the other two (both also my wife). My wife reminded me of that Emmerdale episode which illustrates admirably for the rest of us just how it feels being unable to recognise faces.

[lankeela]

An elderly friend of mine did not want carers to come in a couple of years ago, and couldn't understand why people kept coming to her house. Gradually over the past two years she has totally forgotten why they are coming and no longer complains about them being there. She has always said she doesn't want to go into a home, but I am sure the time is coming when she won't realise that is what is happening if her son decides it is time as she is starting to not look after herself and she is no longer capable of shopping or planning things for herself. Looking back you start to realise how quickly they do deteriorate and she no longer knows who I am when I visit, asking me who else I have to visit that day.

[Barmaid]

From experience, I can say your wife will have to reach the point of "this cannot go on" herself or something will happen which will force the issue.

I think you are doing all you can and your wife is lucky to have such support. Caring for a relative does not just involve the carer but impacts the wider family too. It is a massive undertaking.

Caring for my grandfather with vascular dementia nearly killed my grandmother (and him). An incident whilst my mother (their main carer) was on holiday meant that I had to persuade my grandmother that residential care was required. The first home (very well researched) was a disaster. The second was far better. Adult Social Services were v helpful. The upshot was that my darling grandad was well cared for and my amazing grandmother and mother did not wear themselves out. But, without a life threatening incident, I would never have achieved that.

[DTCwordfan]

I have heard of the MIT work but not really researched it. Keep all options open and it maybe worth having a serious discussion with a good professional though, I suspect, it may take some referring to find one. I would not 'force' your views on to your wife though, the decision to go into this further must be with her backing. As to her sister, I'm afraid that's the way the cookie crumbles sometimes when it comes to families. Would your sister give up a long weekend or week per quarter to allow 'respite' - an alternative is a home for your MIL for the respite and, apart from giving your wife/you both 'me time', could help give her an insight into the care that is there.

Yes Barmaid is correct, often an incident can push the situation towards a resolution - that brings up the issue that the two of you need to ensure that you are both in good health as if you are seriously under the weather, or have an accident, which I did and described in the book, it brings home the importance of health of the carer - both physically and mentally. In short a half-crocked carer is seriously limited to what they can do.