Stress of dealing with dementia

[sugarandcyanide]

MIL has been diagnosed with dementia following symptoms that have developed over the previous few years. Over the last year she has deteriorated rapidly.

It's so difficult to cope with. Husband is doing his best whilst also working in a job which requires long hours. He goes over whenever he can but when he's not there she is calling constantly.

It feels like we're constantly problem solving. She loses things all the time so we've tried tech to fix that, locks herself out so we got a key safe, can't work TV or phone so we've had to find solutions for that. It's emotionally draining and we're both struggling.

We're trying to find some sort of assisted living but it's overwhelming trying to decide if it's right for her and deal with the finances. She wouldn't agree to a care home and still has capacity but she needs to be somewhere with support, we can't work full time and care for her.

I don't know what I'm asking for here but my mental health is falling apart and I can't keep burdening my husband with it when he's got enough on his plate already. I have some counselling lined up but I'm not expecting miracles.

We're not even 40 yet, we can't give up our lives to care for her. How do people cope with this?

You need a cleaner carer to sit with her during the day.

You do the best you can, to the limit of what you are able, then at some point the wheels come off and change is forced through.

Does your DH have POA? Does he have any siblings? Does your MIL need any personal care - eating, drinking, medicines, washing dressing etc?

what age is she, does she have any awareness of her condition?

there are places with assisted living which can step up or down according to needs. So a full on nursing home on the same site as flats with warden support. Maybe something like that might be an option?

Is she definitely ' competent'?

If she has capacity and won't move then in the time old fashion you are going to have to set your boundaries and wait for the inevitable crisis to occur.

You need to put your own oxygen mask on first.

Don't respond immediately to calls/ messages

Switch your phone off /periodically block her calls. Only respond at strict times.

When the inevitable does happen sods law indicates that you will feel guilty.

I can't remember if you said, but will she have carers/ cleaners go in? As that might be an option.

Would she be eligible for funding? Or have to pay herself?

If there is money to spend and she will let help in the house/garden then throw money at the problem

It's not going to get any better unfortunately.

Oh Gawd. Has she had a care assessment by social services? In some areas social services seem not even to advise if someone if self funding though.

I think she is going to need a care home sooner rather than later. Who has determined that she has mental capacity to refuse a nursing home? Any move is going to result in a deterioration and she’s clearly declining fast.

The main thing I would suggest is calling the Age UK helpline.

If a care home is still not an option, tbh I would go straight to extra care housing (google it for your area) as she is clearly too impaired to cope with a place where there’s just a warden on site a few hours a day or something.

Might she agree to a respite stay? It sounds as if you are getting quite ill - you wouldn’t need to exaggerate much to say that you must have a break for a month.

She has carers going in and a cleaner. She is in a better position than most as she has good friends and family that help care for her but as soon as she is alone again she's on the phone to one of us. SIL lives a few hours away and doesn't offer any help.

We don't always answer (that's what mental health team advised) and it does work sometimes because she forgets what she was upset about but obviously it is still a worry wondering if shes ok if we don't answer.

Social services showed very little interest because she's self funding but care costs are rapidly eating in to that. She doesn't have lots of money aside from the house. All they would say is arrange your own care.

It is extra care housing we're looking at so I'm hoping that will be a good practical solution. Age UK have helped with financial advice but it's still very expensive.

I've been through this before with my nan though it was my mum that bore the brunt of that. I know this is only going to get worse but in some ways once it's progressed further and they are in full time care it actually gets a little easier as they stop understanding what is happening. MIL knows what's happening to her.

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I’m so sorry this is happening to you . This happened to me at 40 with two young children . It was a long 10 years. Covid nearly finished me off as we discovered that hell has basement but further floors below with various luxury rooms of further torture You cannot do this alone . Dementia takes a team . Care homes are not automatically the next step . Someone described to me dementia as a bit of a train journey where you have no idea where the final destination will be . Practical steps are POA , GP , diagnosis , accessing elderly mental health nurses in the NHS . Getting help in ( easier said than done - this was a massive battle for me as my mother believed she was absolutely fine ) - we started with a cleaner who was naice local lady who did a bit of gardening and then scaled up , then private carers who popped in - 3 times a day , this scaled up in two years to a live in 24hr carer post Covid . We had periods of respite a care home usually after a crisis hospital admission . All self funding - my dad had made sure mum was left with money - it was tens of thousands we spent . A live in carer was 6k a month and that was 5 years ago . I was on call all the time . We had a great local company who are a UK franchise and I got recommendations from local people. They employed both local and overseas workers ( they tend to do live in care )

if you search my name on mumsnet I’ve given similar advice , I lurked on the cockroach cafe thread on the elderly forum here . I watched a lot of Teepa Snow videos on you tube who is an amazing geriatrician who is funny and helped me deal with understanding mums condition . I spent a lot of time in hospitals . I had a grab bag for emergency in the night dashes . I had folders of notes to give to doctors . I read an amazing article in the guardian called the deviousness of dementia ( google it ) and came to the realisation that I would never really understand how it works
but it is much more than losing memory and that no matter what stop gap I put in next it wouldn’t be enough and I needed to try and be ready for the next stage. You have to harden your heart sometimes because the next stage normally is preceded by a crisis . Also when it got towards the end it was easier in a lot of ways than the beginning. I probably trashed my health with too much smoking and red wine which I gave up after my mum died . I swam a lot which helped me . I realised my mum was living on shifting sands and I was her only lifeline - our relationship had always been rocky - it was awful . I was jealous of people who I met who had relatives with dementia who were compliant and and in a bit of a bubble but equally we were spared the horror of of the other extreme where people become violent . My advice is to start asking around for care recommendations and see your GP . Even if your mum has savings you are entitled to a care assessment . Be aware the social care system is pretty broken . There is lots of advice on the elderly parents forum . It was invaluable to me . Good luck x

We've said a live in carer or someone who can spend time with her would be ideal but it's just not affordable unfortunately. Her money is tied up in the house and it's not even an expensive house.

Thankfully we have sorted out POA a couple of years ago.

I don't know how people with children and ageing parents cope. It must be doubly difficult. We chose not to have children because we didn't want to be responsible for anyone else and now in this twist of fate we are.

I feel like its been a horrible year and I'm just stuck in anxious high alert waiting for the next thing to happen. I am on edge all the time. Our lives were so carefree and everything has changed.

You mentioned you are overwhelmed with the decisions of what could be the next financial or practical step . I often felt that way - second guessing myself all the time ( I did it all , on my own ) . Ultimately I made sure when my mum passed it was dignified and well cared for . I also managed to be with her . It was partly by luck rather than design as she had so many hospital admissions and near misses at home . Bearing that in mind might help you with a decision . Also nobody can care for a person with dementia on their own as I said . I’ve had it written up already - I want carers/ homes no matter what I say !

Get help early if you can, I didn’t and I had appalling anxiety for years, constantly waiting for the next thing to go wrong. Even now I jump if the phone rings.

Think about your mums needs (not her wants - the fact she may not want carers, etc is irrelevant). Get help. You are not an inexhaustible supply of caring. Look after yourself.

Yes - I had similar - I was 9 months pregnant with my second child excited for the future as a family of four and my dad suddenly passed and mums previous awkwardness and what other relatives dismissed as “ grief” made us realise something was terribly wrong . I feel for you - presumably your sil is useless or in denial . I think your post makes it clear - you are totally at the step back stage . I completely understand - I had to leave my mum hospital under Covid restrictions for 9 weeks to force best interest meeting . People must have thought I was utterly heartless but I was broken . I think if you could get some respite care for her for two weeks that could let you regroup and think more clearly . Just because you don’t have kids doesn’t make you be able to give up your life for her . It’s not possible . People with dementia need proper 24 hr care .

It’s so hard isn’t it?
have you asked the local council for a care needs assessment? Have you got a social prescriber at the GP practice you can speak to?
have you applied for council tax to be stopped as anyone with serious mental incapacity does not have to pay it.
admiral nurses are specialists in dementia so they may also have some ideas.
my mum was diagnosed a few months ago but rapidly declining too.
she currently lives in an independent living flat that she owns although we don’t know how long she’ll cope there, so is over the threshold for having care paid for, although we will be looking at NHS funded care too.
we will have to sell her flat to pay for her care and those funds will last between 6-9 months depending on the cost of the care she gets, then social services will have to pay:

To this day - I ask people to WhatsApp/ email me - I loathe answer phone messages on my phone - I hate listening to them - they often go unheard until I force myself . I used to have hundreds from social workers , the care company gp etc . Luckily now it’s the dentist usually . Please watch Teepa Snow videos - she will actually make you smile and give some great advice x

I went through this for ten years with my mother. It was a real relief when she moved to a care home.

There can be problems for people with dementia moving to extra care facilities. Firstly they are not usually secure, so she could wander off which is a safeguarding issue. Also she may exhibit the type of 'antisocial' dementia behaviours which upset other residents and be asked to leave. I know you say she has capacity, but it sounds doubtful. Even if she does now she probably won't for much longer.

My mother coped at home with carers for a year or so, but then things deteriorated. It was fine when they were there, but she was alone most of the day and fearful and anxious. Within weeks of moving to the care home she loved it, there was always someone to help and reassure her.

Your MIL will never be able to make the decision herself so your husband will have to do so. I really sympathise, it is a decision none of us wants to make, I certainly didn't, but the care home was the least-worst option.

OP , I feel for you. Both my parents have dementia. It is hard work, im a single parent and work full time.Age UK were really helpful in their cases, as were Social Services ( this obviously differs in other areas). Are there any dementia groups she could go to? There are a few around where I live and there are dedicated services that will collect / pick them up. AGE UK have day centres , my dad goes once a week. He is collected and dropped off by them, it's brilliant. Long term though, you definitely need to look at assisted living. It's so hard though to know what to choose. What I would say though is get her care needs assessed properly by SS and go from there. I really feel for you. I live on the edge most of the time worrying!
PS -AGE UK have their own 'handyman / person' for any repairs etc.They are reasonably priced and are great with the elderly.

OP

it sound like you already have a lot in place for her, more than many do. What exactly is causing you so much anxiety? From your posts, it sounds like it’s the repeated phone calls and having to be ready to least into action, and worrying about what might come next.

im not minimising what you are going through, it just sounds to me like you are already doing a lot and maybe you with counselling can focus on accepting the things you cannot control.

if aren’t even 40 your MIL must also be quite going? Which means she could live for many years with this condition, and you can’t live on ‘high alert’ all that time.

She needs to go into a care home that copes with dementia and end of life care ... so she never has to move again.
She's had a good innings.
Do not sacrifice your life for her.
My mum went into a care home against her will. She was furious with me for a couple of weeks then became much happier and fitter. It's a huge weight off my shoulders. You will have to sell her house to pay for it but you will get your life back.

My mother refused all help , wouldn't let social services in to assess her
She was always a difficult personality,and wouldn't be told anything
Carried on as usual, getting lost and random people putting her in a taxi and sending her home .
Eventually she had a fall and ended up in hospital for a month while she was assessed and found to have dementia and no capacity.
So I had to move her to a secure nursing home ..clear out her house ..sort out her utility bills ,deal with solicitors, estate agents,..was an absolute nightmare.
From there all her money went on the £7000 bill a month nursing home .
Best thing you can do is have POA in place ..if I didn't have that I would still of been responsible for her ,with added stress .
Even though she was an adult with capacity,untill the fall ,I was still expected to be responsible for her by social and NHS .. despite the fact I didn't live with her as a child ,and despite the fact I didn't see her for 20 years ..
But I was still expected to go above and beyond for someone who had never given a crap about me .
She since had issues at various homes and I've had to move her 3 times ..
I'm expected to attend all medical appointments with her ,and be involved in mental health issues and every doctor appointment.
Despite the fact I had a young family with disabilities,not in school.
Nearly drove me to a breakdown

This is exactly what's causing the anxiety. It's the fear of what is to come next and living the next decade of our lives like this. I know this is only going to get worse and she is still fairly young. My nan had dementia for a very long time and I've seen how this plays out.

It's also the weight of the responsibility of all the decisions. We're not sure if extra care housing is right for her or if she'll just be asked to move if she's too far gone. But then we're not sure of the alternative because of the concern that she's not safe at home.

We're going to ask for another care assessment from social services, although they weren't helpful at all last time, and hopefully the housing place will be able to give us guidance on whether they can accept her.

Be aware that moving to a new environment can accelerate the decline so what seems ideal for her as she is now can rapidly become insufficient. Mum's GP advised missing out the assisted living stage as she would likely need to move to a care home within 12 months if she did. I doubt her ancient flat pack furniture would have survived a move so that would have also been an extra task for little return. But it depends what stage, how quickly she's declined and how you are placed to cope. With dementia there is no one size fits all which makes something tough to manage even harder.

This is my worry with extra care. She's not aggressive but she has started to go out and get lost. The flats all look the same so if she goes out on her own she'll never be able to work out which one is hers.

It'll either make her reclusive, which completely defeats the object of us moving her there, or she'll keep getting lost and might be asked to move.

I don't feel like she is ready for a care home though. It's strange because she has major problems with functioning but in herself she is still quite with it.

She has no memory for little every day things, she can't remember if she's taken a tablet for example and she can't follow a very simple set of instructions or tell you the date, but she'll tell you what her friends are up to and what's going on in their lives.

I didn’t think my mum was ready for a care home either. She was. More than ready. You’re probably masking or covering up a lot of her issues without even realising it. It was a shock when mum was suddenly put in a position with strangers (on a hospital admission) how incapable she was at dealing independently with any aspect of her life including communicating her needs.

Your mum sounds a bit like mine. She doesn't need help with personal stuff and prepares her own meals, albeit ready meals from the corner shop. As long as everything is on an even keel she copes in a basic way. But if I didn't put her meds in a pivotell with an alarm she either wouldn't take them or would forget and take multiple doses and as soon as there's a problem she has no idea how to deal with it. Except she thinks she does and usually ends up making the problem worse.

My mother was on the surface totally with it During her last months she could tell you who the prime minister was , where she lived , who we were etc . She also thought people lived in the loft , she lived in a duplicate house , might go to work and get a job as I was so “mean” to her . It was quite darkly comical at times . She used to write me shopping lists in slow crawly spidery writing . She couldn’t read them back to me though , not because she couldn’t see them or work out it was illegible ( I could recognise certain words for sure ) it was because her brain could not process the information . I read later that writing and reading were governed by totally different skill areas of the brain . She complained she needed new glasses - the carer took her to the optician who said her eyes were fine and in line with the prescription it was likely the visual information could not be processed by her brain . Likewise I realised later she had long forgotten how to follow the plot of a film , often declaring them boring early on in her 60s way before the dementia really reared its head . She later near the end would sit and watch of all things re - runs of friends happily - something she would have never done in the 90s. She would laugh at it. She didn’t realise - it’s a bit like when we need new glasses - when you get them - you realise how bad your eyesight was and how you coped - only she wouldn’t. . The brain is dying - sometimes it rereoutes but it’s a complex machine . This too wil have an impact on her physical health especially her pulmonary system making her more susceptible to chest infections . SS suggested once I leave a flask of hot water so she could make a drink when I explain she no longer understood the process of how to make a cup of tea although she though she could - it would be the same as giving the task to a 5 year old . Watch out for hostess mode & sundowning . They mask well to visitors but they are not doing on purpose - they are well embedded social behaviours out the brain remembers - one particular way I coped was to read everything to understand dementia and perhaps “ cheat” it . I struggled with what to say and not lose my temper . I got cross with the suggestion of distraction techniques . That is not so helpful on the early mid stages and it’s not a one size fit all solution .