If you have a parent with dementia, how do you cope?

[JustlookingNotbuying]

Because, currently we are not coping well at all.
Mum is 79, dad is 80. Mum was diagnosed with Alzheimer’s in 2018.

I am not sure what stage she is in but would say it’s the late part of the early stages. As each month passes, her memory is getting worse and worse and her needs greater. She is forgetting so much.
Dad does not cope well. He is quite a stubborn man and whatever ‘help’ I have suggested over the years he has sneered at or refused but he constantly moans about how he can not cope with mum etc.
Yet he is lucky in many ways because he has both his dd’s living in the same village as they do.

My dsis works full time but pops in a few times a week and does a big clean once a week (she has her own cleaning business). I work part time so am about more than my sister (although am just as busy as I have dc and she doesn’t).

Up until last year I was doing most of the help, I was doing a lot but had to take a back seat as I made myself very unwell with the stress of it (dad totally oblivious, says I’m stressed because of my dc!), but I still do a lot.

The problem is that if I don’t help with things like washing mums hair and cutting her nails etc then it doesn’t get done (although he has, this week allowed her hairdresser to come in once a week). I refuse to let my mum look disheveled because dad can’t be bothered to help her and say things like ‘well she’s got dementia so she won’t care how she looks’. Mum always took pride in her looks.

Like I say, dad has refused many suggestions of help and after a year or so of me suggesting a carer he agreed to let me get one in for an hour a week to start with, kind of a foot in the door but 4 months on and she is still only there for one hour and just draws pictures with mum. I’ve suggested we now up the hours and get her to do some more bits such as personal care but he used all kind of excuses not to take this forward, ie he’s not too keen on the carer as she’s a smoker (she never smokes in the house of course) or she’s very expensive (She charges £22 per hour and mum has £90 per week attendance allowance and they have ££££’s in the bank ffs). He is always finding an excuse. I know he really would just be happy for my dsis and I to do it all regardless of how stressful it is to us.

He moans constantly that he has no time to himself so I got mum in a day centre for one afternoon per week to give him 3 hours but because mum doesn’t remember from one day to the next she would get confused every time we got her ready to go and say she didn’t know where I was taking her and she didn’t want to go (she was always fine when I got her there and collected her) but dad insisted we cancel it. Now all her does is moan that he can’t even have a daytime nap without mum bothering him.
It is so so stressful. I just don’t cope well. I feel sick to the stomach with it and with my own issues (anxiety, depression bad IBS and Perimenopause), caring for my own family and being a part time carer myself I literally feel like I am losing my own sanity as I’m splitting myself into a million pieces trying to help everyone.
It is on my mind 24/7 and has a huge impact on mine and my families life. DH gets really pissed off as he thinks dad should dig into his pockets and fund the help himself rather than relying on me (dad is very old school and thinks I should give up my job and dh support me!!). I understand what dh is saying and agree but he doesn’t see the predicament I am in, I feel torn as I know my parents are struggling so much.
If you have a parent with dementia how do you cope with the stress of it?

It's very difficult.

I would tell your Dad (lie) trust your Dr says you are not too well and should do less.

Decide which things you want to give up and tell him that those things need to be delivered by paid people.

Ignore the word "trust". It should be "that".

What is your parents' GP like, or is there a dementia nurse who visits?

I think you need to go above your Dad's head to someone who is involved in your mum's care and tell them you are under a huge burden but just you cannot carry on as you are.

They will be going in and asking your dad 'How are things?' And he will be saying 'Yes, everything is fine my daughter is taking care of things'. You must tell them this is not true, you can't cope and that if something happens to you (you might get Covid, break your leg, anything) that things will go sideways very quickly.

Tough gig, OP. You, your DM and your DSis all sound lovely
Your DF is obviously the problem here.
He's not 'old school' he is selfish, mean and unkind. (And probably frightened.) So give him the correct label. You are allowed to step off his tread mill and take a step back.
He has two amazing daughters but he wants to put you all through the wringer. He wants to sacrifice your health and well being for his.
I'd meet with DSis and and agree to work as a tag team to put your DM central to everything you do.
Then absolutely change the way you work and deal with him
He has capacity and rainy day funds to make things so much better.
If you turn up with meals or do washing, just do your DM's. Absolutely focus everything on your DM. Don't try to help him get time off. He has undermined your efforts and sabotaged schemes. Let him reap what he sews and focus on DM.

I am sending you solidarity. I honestly could almost have written your post. I came to this talk section planning to start a thread about this.

My mum also has alzheimers - I don't know what stage she is at but she cannot remember things that we say from one moment to the next, and she gets worried and anxious about all kinds of crazy stuff.

I tried for ages to get my dad to have a carer in and he was always against the idea. I found the perfect carer, and gently gently set up a meeting between them. My dad didn't think he had room for the carer to be in his house - so I arranged for them to come to my house once a week and the carer looked after mum for 3 hours while I worked, then dad could collect (we all live nearby). My mum liked the carer, and all was well. But my dad was always negative about her, and after a few weeks he just cancelled the carer without talking to me. I simply couldn't fathom the reason, but I've come to the conclusion that it is the money. Not that he can't afford it because he easily can - and I would happily pay myself as I have told him - but just that I think in his head it seems ridiculous to pay £20 for someone to chat to mum.

Mum does go once a week to a day care place. I think dad thinks this is okay because it is more 'worth it' - e.g. they give her lunch. But afterwards she is stressed and needs to be (in my dad's view) immediately distracted by coming to my house for a bit (which is fine). But it's just once a week, and I won't be surprised if dad cancels this too because it 'unsettles' mum.

Still - my dad complains about never getting a break - and it sounds horrendous. Mum is often worried, and wants to talk about things and worry about things with someone a lot of the time. And there are night wakings to go to the toilet which she can only just manage alone. My dad is an old man who would like peace and rest!

Dad phones me every day to talk to my mum on the phone because she is worried about something (e.g. she wonders why she is living in that house, who the person she's living with is, why I am not there etc). I visit her every other day, but I work 0.75FTE and have 2 children, and it is very stressful! My dad alternates between being proud of me, and wanting me to be available in a way that really is not compatible with having a job.

My brother is also great and visits about once a week. But I do most of the visiting - I guess I'm the daughter (sigh) and I live nearer (10 mins walk). My brother says 'stop enabling him - he'd have you visit every day if he could and will never get a carer' - but I think that if I stop visiting then dad won't magically sort things out, but mum will just have a worse time and dad will be more miserable.

I'm sorry for joining in with your thread, and I have no wise words to offer, because I am struggling with a very similar situation and can't see the answer. So - I'm just sending you support and understanding - it's a very difficult and stressful situation. One thing I do know is that we should try to be kind to ourselves and not expect ourselves to get everything right.

@badger2005 and @JustlookingNotbuying

The answer in a nutshell is to deploy and accept more and more assistance from outwith the family, attend the day care facilities if and when offered and bring in the maximum amount of help they can afford.
However, in both your instances, your DFs are the gatekeepers and they get frightened and panic. No one wants strangers in their home. They don't want to pay out to people when you can do it for free and are near by. Even though you've set it up they are not eally on board. They try 'your suggested route' grudgingly for one week or two weeks, they don't like it, they cut it off.

The difficulty is to get them to see that the rainy day money they've been saving is for use now. The other difficulty is getting them to see that it takes sometimes months to build up relationships if help is only 'one hour' a week.

If your DFs were aware of the impact it has on your working life, your family life and your welfare you wouldn't mind so much. But they are throwing you under a bus. This is the 'bit of the chain' that most needs fixing. It's them throwing you under a bus and them being either unaware or uncaring.

Exactly @Mum5net I guess I have an idea of how things could be better (carers! just much more external help as you say) but it's not at all clear to me how to get that to happen.
One idea is just telling my dad how things are for me - that I'm struggling to fit everything in - but I honestly don't think that that will prompt him into getting carers in. He will just say 'okay fine - don't come so often, we will manage', and then he will have a very hard time and mum will be less happy.
My goal has been to get through this difficult part of life with no major regrets, and I think that telling him I can't help so much might lead to major regrets. Plus I think I can cope - though it's difficult and stressful.
what about you @JustlookingNotbuying ?

You and your sister sound like very caring and supportive daughters however, you both have other family and life commitments and cannot provide the support your mother needs. You have tried to discuss this with your father who is the ‘gatekeeper’ to the house but he refuses, as he expects his children to provide the care and does not want outside help.

I assure you this situation is very common but, it seems to be at the point where you need professional help. I would advise you to look on your local council, adult social care (ASC) website and make a referral for support with your mother. Make ASC aware, your father is rarely accepting outside support and family are limited in how much they can do. Say you are concerned your mum care and support needs are not being met and as this goes on, it could lead to neglect.

Hopefully you would be assigned a social worker who could talk to you all and hopefully encourage your father to allow your mother to have a care package.

I'm sorry OP, it's so shit. I don't know how I cope really, some days you just cry to yourself and other days you plough on regardless. The lack of sleep and groundhog day is soul destroying at times.

My parents are around the same age, although it's my dad who has dementia. I moved back in with my parents during Covid to help out (as my mum also has health problems) and my sister lives near enough that she helps out when she can. I can work from home so I'm here but not available all day but my mum does the majority of the actual caring. We also have a brother who hasn't bothered to contact us in years so he's useless, even though he knows dad's condition. It's very strange because most of my friends parents are younger and in good health, so people don't really get how all consuming it is.

Dad is in the later stages in that he doesn't really know us, can't hold a conversation, needs help washing dressing and going to the toilet, has no appetite so has to be helped to eat most days. He also hallucinates and talks to people in magazines and on tv, and sometime shouts and gets upset at nothing.
Although weirdly despite smoking for 50 years he is physically fairly healthy, he is mobile, can walk long distances and his heart is good etc.

The thing I would say is deterioration can happen quickly and it can throw your off completely. A few months ago, we were coping well with dad, but now we are looking into care homes because the decline has been so bad.

You and your sister need to sit your dad down and be clear that you will not take on everything, and if he won't step up then carers need to be allowed to do their job. It's heartbreaking to think that your dad is not willing or able to give the care to your mum that she needs. I know in my heart if it had been my mum who got dementia, my dad would not have been really good at caring for her, he never did much for himself so he just wouldn't have stepped up.

Anyway, sorry that was long. I don't have much advice but you are not alone. It's so hard, and I know when dad goes into a care home, I will be sad but also relieved as we are well past the stage of coping. My advice would be put things in place before you think you will need them.

I just wanted to say that your dad is exceptionally lucky to have two such lovely and helpful daughters both half KILLING themselves on his and your mum's behalf.

Perhaps you can come to see that a big part of your caring role is to sit and listen while he moans and complains. Springing into action is much less part of your role.

I think if I were you I'd go back to work full time and be a bit less available. The hairdresser is an excellent step forward. Ask her on the QT whether she would turn into a manicurist/carer if asked.

My DF has been diagnosed with Vascular Dementia very recently. I live over 100 miles away and have a chronic health condition. I am.driving to my parents once a week to assist DM by taking her shopping etc. DM is refusing carers and is not being honest about the situation with Dr's she is hanging by a thread. I have managed to get an appointment with a Dementia care specialist this week and I'm hoping she can help in some way. I feel DF is deteriorating rapidly, he hardly speaks (just points) in the last week or so he has got physical weaker and can't stand, is incontinent and keeps strange hours of waking I.e watching TV at 2am but sleeping in the day.

Other family members are helping and covering when I cant be around but I feel like I don't have a life of my own anymore, I feel angry, scared and frustrated. I am desperately trying to help but DM is so resistant to everything I suggest, she is terrified of my DF he has always been a bully and very controlling and this behaviour has got worse. He has raised fists at DM but the psychological side of his bullying is worse. DM doesn't want anyone to know about this, she feels it will take away from the good side he has and they will just think he's a bully (I am struggling to see he's ever had a good side).

I'm struggling, the strain is affecting my health but I cant turn my back on DM when she needs me, in all of this I'm struggling with my feelings about DF, I don't like him, he's not been a good father, he was cruel, spiteful and a controlling bully I am doing far more for him then he deserves.

Oh @Tara336 I'm so sorry. What a terrible time for you. The only chunk of hope i can see is that your df is deteriorating so fast - sounds as if a crisis may occur quite soon and things could change. But I'm afraid for your dm too.

@PermanentTemporary I have been told vascular dementia has a more pronounced decline then other forms, to expect him to decline then stabilise and so on. My feeling is that he is near the end, he isn't eating regularly and just drinking. The battle to get a Dr out to see him has been insane despite what I've been telling them. We are due a visit this week so I will ensure I am there as I'm concerned for my DM health as well. The problem is my DM fear of him which other family members have also mentioned, I actually feel embarrassed having to tell someone how awful he has been/can be but I have too to get the help that's needed as DM isn't going to be honest about it.

My DF has dementia, not diagnosed officially yet, he has an appointment at the memory clinic next week which we have waited about 6 months for, he hallucinates, can’t remember who people are, gets very confused but will then have periods of absolute clarity and humour.

DM isn’t coping well, it has not been a happy marriage, more like 2 people living in the same house for convenience and there is no love or patience to help him but lots of resentment and anger, she will argue with him rather than reassure and calm him.

I work 30 hours a week, I have to take DM shopping, to all appointments, do all the phone calling and form filling to get support. We had an ASC assessment, they will provide some respite care but the financial assessment needs to be done first, it was started in May this year and apparently will take another 17 weeks!

I feel totally trapped, every morning it’s the first thing I think about, having to phone my DM and see what sort of day they are having, will I need to go over and calm things down when I get phone calls and they are both just shouting at each other, it’s affecting how I view DM as I now see an unkind and unpleasant side to her and have to pull her up on it frequently, I also realise I may have many more years of this and do feel it’s affecting my mental health.

@Rattysparklebum one thing for the memory clinic be prepared to be there hours, luckily I was warned by someone in the know beforehand as I had imagined it would be an hour max

@Tara336 how about reporting a safeguarding concern about your mother? I've just checked, and I was able to Google the public form to report a concern about a vulnerable adult. That way when you talk to the GP you've already got something to tell them.

Thanks @Tara336, I didn’t realise a memory appointment would take that long, I’m mentally exhausted just thinking about it.

@PermanentTemporary thank you, that's really kind. I will look into that, the dementia care specialist did broach controlling behaviour with me on the phone but as I was in DM and DF presence I couldn't say as much as I wanted. I have a number to call her so am going to do that tomorrow and have a more open and honest conversation.

@Rattysparklebum you will also see a couple different people one being a psychiatrist that's why it's quite a long appointment. The info we recieved prior to going was quite sparse. It took a couple weeks for the report to come back which is very detailed. We went through it last month, our appointment was very quick to come through, I think possibly becoming DF is going downhill so quickly (that's only a guess though) and maybe difficult health trusts have different times

@Rattysparklebum maybe ring the clinic and say how worried you are? They must be used to people who will struggle in that situation and the ones who have to look after them

It is very difficult. We got outside help from early on and built that up over time (one visit a day, up to three visits a day) and then when my mum was too far gone for that we found a care home for her. We all work, have families etc, it was the only way and the best thing for her. That was incredibly traumatic at the time, but more for us than for her. She didn’t know who we were by then and she forgot her previous home within minutes.

I think our trust has a backlog, DF was referred in early May, when I called the memory clinic in June to ask for timescales, they told me they were working on January’s referrals!

@Rattysparklebum I would like to say I'm surprised but I'm not unfortunately, I think we were just really lucky. We are all learning as we go along where to go for help as it does feel sometimes that we are very much left to get on with things

Mum has alzheimers and dad is a miserable sod who makes the situation worse not better. I and my husband cover everything and it is tiring. The most help I have had is from these forums in terms of practical advice.
Not sure if you have done this but look up Admiral Nurses. They are beyond exceptional and are there to help the carer not the person with the illness.
Dad refused help from them which is no surprise as he has refused help from everyone. Adult services said they would pick him up once a week and take him to a social centre where he could do some simple exercises and then chat with tea and biccies. He said no to that as well.
Incredibily they both are adamant they are coping well and absolutely do not need help. It makes me so frustrated when they say that as I just think that if you dont need help then stop calling me most days. I go in to do everything and my Dh does a lot as well despite both working.
You have my fullest sympathy

@FlatOutAgain we have just had Admiral nurse recommendations to us, does it take a long time once contact has been made to see one? My DF is like yours, won't let anyone come in to help and won't go out to it.