DM has early onset Alzheimer’s, impossible DF! (Long post)

[CancelledCheque]

Hi all, my DM is 60 and has just been diagnosed with Alzheimer’s. She also had an elective hip replacement in July and tells me she has been religiously following her physio regime, but I’m not convinced as her mobility is still very poor: she is still relying on a stick much of the time.

My DF has many narcissistic traits and is older than my DM: he is 73. He is quite controlling of her. He is also very resistant to any suggestions made to improve their situation and refuses to follow medical advice. There are numerous examples of this, but one is that he had a coronary stent put in after a heart attack 3 years ago, and refused to take any prescribed medication or attend cardiology follow-up. Instead, he has spent a lot of money on alternative remedies and supplements that he has found online doing his own ‘research’. There was also a recent crisis where he went into urinary retention twice in a fortnight and needed a catheter because he refuses to take medication for his terrible prostate problems that get him up to the loo up to a dozen times a night. He takes a homeopathic remedy for this and will not consider medication or a surgical procedure. All of these incidents require a huge amount of attention paid to him, multiple phone calls offering advice, district nurses attending on him, many trips and calls to hospitals and GPs, etc. The stress of trying to help from a distance is quite heavy when I can’t just drop everything and leave my children to attend to my parents.

I am 34, the oldest of 7 children and I live 200 miles away from my parents. I have 4 young children of my own and am pregnant with my fifth. My youngest sibling still lives at home and is in high school. The rest of my siblings also live far from our parents but I have probably been providing the most emotional and practical support for them.

I am in the process of arranging to become financial and welfare PoA for my mother (joint and several with one of my sisters).

My DM’s parents both died last year and their estate will provide around £180K for my DM. This is tied up in property at the moment but should become available later this year. My main concern is that this money needs to be ringfenced for her benefit and possible care in the future. I have deep concerns that my DF will fritter away this money on things that he wants as he has a pattern of buying expensive things, and has never had an ability to plan for his future or save/manage money. I worry that his own cognition isn’t great but he would point blank refuse to be assessed and I am quite sure he has capacity to refuse medical treatment or advice at this point in time.

My parents live in a large house which is owned by an organisation my father worked for that allows them to stay for peppercorn rent, on condition that they pay for council tax, utilities and so on. It is an informal arrangement that has gone on for many years. Unfortunately, the house is in a terrible state of repair and nobody will take responsibility for its upkeep. My DF refuses to heat it properly or turn on the hot water as it is too expensive (despite his winter fuel allowance). It is mouldy and damp, and crammed full of their junk as well as furniture that has been donated/dumped by this organisation. My DM struggles to manage the stairs. There is no shower and she can’t get in and out of the bath. Her hygiene has suffered as a result and she struggles to wash her hair and herself properly using the sink. My DF will not countenance carers, and when my sister tried to set up a cleaner once a fortnight she almost started a nuclear war as “this is a private house and we will not have people just coming in”.

Matters came to a head a few weeks ago, where we had a family meeting and all of my siblings told my parents that we were really concerned about their well-being and that they had to decide where to move. They should choose to move to one of two cities to be closer to family members so we could help keep an eye on them. My DM is very keen to be near family and would love a smaller house. My DF had to be left for a couple of weeks to come round to the idea but has accepted that it would improve a lot of things for them both.

The inheritance coming to my DM will be enough to buy a house (they have no other savings and only a tiny pension), and I should be able to deal with the purchase once the money is available and I have been granted PoA. Has anyone else had to protect money coming to one parent from another? My current thought is that if I set up an account in my DM’s name for her inheritance, it will be protected for purchasing a house for them and my DF will not be able to decide to spend it on other things.

We live in a renovation project of a house with a large mortgage and many drains on our own finances, and I have concerns that some social/medical crisis will occur that mean I will be obliged to take my parents and youngest sibling in and look after them too. I’m the only one of the family that would remotely be able to deal with this. If this happens, I think they would probably refuse to budge and would be stuck in my home. This is the last thing I want when I will shortly have a newborn to care for as well as my DH and 4 other children.

I apologise for such a long post. This isn’t the full story by any means, but I am in the unusual situation of acting almost as a parent to my own parents, while my own children are still very young (and one unborn!), with parents who are 5 hours’ drive away, and very resistant to making changes. I am doing my utmost to help and make life easier for them but the wheels of bureaucracy grind slowly! One of my sisters is reasonably supportive, but she doesn’t own her house, is saving to buy a home and has a baby of her own. She gets very angry with my DF and there is a lot of friction between them so there are tensions there. My other siblings are not able or willing to support our parents or me, so I feel fairly isolated.

I know there’s nobody that has all the answers to this complicated situation, but it would be so good to hear from anyone who has dealt with similar. I really appreciate anyone who has waded through this and might have any helpful comments!

Hat’s off to you - you are dealing with a HUGE range of stressful issues which a younger me could never have faced.
Keep it simple. Adopt the mantra path of least resistance . I’d telephone the SW team in their area and tell them what you’ve written here.
Your mum is so young to have dementia . Take care of yourself and immediate crew first and reach out to your school age siblings if you can but but don’t stretch any further.

Oh thank you rinse, I know my post is ridiculously long and that is genuinely the condensed version. My mother is indeed very young to be diagnosed; her mother had dementia but was in her late eighties or nineties at diagnosis.

My DF thought she had Alzheimer’s but didn’t take her to see a GP. The only reason she got her diagnosis was because my DH and I wrote a letter to her GP with our concerns and asked for her to be investigated. It is further complicated by obstructive sleep apnoea (which we pushed for to be investigated as a dementia mimic), and she was given a breathing machine for use at night. There was a prolonged drama requiring many phone calls, hospital reviews, online searches for instruction manuals and so on as my DF wouldn’t let her use it because he didn’t know how to, so there is a partially reversible element to her cognitive problems that was incredibly frustrating when she wouldn’t or couldn’t use the machine. She does use it for 5 hours a night now.

My main concern is to protect my DM as much as possible, as she has become so dependent on my DF but he puts his own concerns above hers, or perhaps just can’t really see what she needs. She does have a CPN who has visited at home several times and pushed them to consider PoA which helped. She was also trying to go back to her work as a teaching assistant when her physio told her she was physically fit, despite me asking her if she thought she would manage from the cognitive point of view. She missed the social contact when she was signed off after her hip replacement and seemed to have limited insight into her limits. The CPN has encouraged her to take up things she enjoys and put her job behind her, so that helps.

My sister is an OT, and I trained as a doctor and am also married to a doctor, but being on the other side is so different. The worry is utterly exhausting and mentally consuming, and I’m not even caring for her in person.

Another thing is that I feel like I’m trying to manipulate my DF to a certain extent, to try to get him to do things in my DM’s best interests by framing it as in his interests as well! I know my own husband would be falling over himself to do what he could to help me so it’s another thing I find difficult.

I know there is a limit to what I can do, but I was always brought up to be the responsible one and I am not able to walk away when I know and can see what is possible to be done to help.

Sorry for the outpouring here and I know a lot of people have it much tougher. I find it cathartic to write this down as there are very few people I can discuss things with in real life.

Hello CancelledCheque - Your parents are incredibly fortunate to have you looking out for them. I would second all the above but having been caring for my DM with Parkinsons and many other complex needs for 11 years, could I reiterate the following.
Do not (repeat DO not) take all this on yourself. I only have one child because the caring (which I was happy to do up to a point because my DM was a lovely mother who did a lot for me (he only child) and my half brother her stepson - let's not go there - quickly became overwhelming and unrelenting. I made the mistake of assuming social services and the NHS talk to each other. They don't so I suggest you get a diary or open a dedicated file online and make sure you record every single interaction you have with anyone on her behalf - when you need to chase stuff up you will find out invaluable to say "but we spoke on (x date) and you promised you would do X.
You may have to do that a lot.
Please don't neglect your children thinking you will have time with them later. It has taken me 10 years to bond with the baby I had weeks after taking on the caring/advocating for my DM. Sit down now and agree with your co LPA/sister what you each can do - and if possible have a back up if one of you has an emergency.
I'm not sure where you live but like it or not you are now an unpaid carer for your DM and as such, entitled to a Carer's Assessment. I waited years to have a CA and made the mistake of trying to come across as fully capable and that just meant I was abandoned by Social Services who in turn abandoned my DM as they decided I could do everything.
Please apply for a CA and also if your local council runs a scheme like mine, apply for a Carer's card. sadly this isn't a discount scheme for unpaid carers (though it occasionally serves as proof that I am a carer - but the main thing is that if you get knocked down by a bus on your way to look after your DM for the weekend, someone should (if the card works) find it on your person and call your DM's local council. no names (for security etc) are on the card but a code will alert the council so they know who you are and they will in turn alert your plans b/ next of kin or whoever you designate (perhaps your sister?) to step in if you are incapacitated. I treat it like an insurance, knowing that if I go under a bus, my mum will always be cared for.
If you aren't already sleeping badly and waking in the middle of the night worrying, don't beat yourself up if you do. But make sure you say "I am going to put x number of hours a week into caring for DM and then stop and look after my physical/mental health. As a trained medic you will know about how trauma can be passed on so PLEASE look after yourself and your baby, remember you are doing a wonderful job already, and try and find an accountant or financial Advisr who has experience of working with carers/ LPAs or people who have been in a similar position. And finally, the Carers UK helpline (only open during the day on a couple of days in the week) often has good suggestions if you can get through. If you can appeal to your DF, remind him that neither of you expected you to have to parent them but as so much as fallen on you, for your sake (and his grandchildren, you would be so grateful if he can cooperate and maybe you could involve him by asking him what he thinks about the things you are planning (maybe not the ones a firm 'No" would make more difficult :) from time to time. Good Luck - and start keeping the diary for reference - I wish I had done it from the beginning...

Actually, I don’t think a lot of people have it harder. You’ve got so much going on and as someone said on another thread recently, only so much band width. Writing it down does help. Off load as much of your mum and dad’s day to day stuff to the local authority. Try to save your brain for the financials/ legal planning if you are able - but not at the expense of your own health and well being. Take good care of you.

And struggling is absolutely the right person to advise

Thank you struggling, lots to think of there. I’m in Scotland and not quite sure what is available and what I need to do. My parents are both very passive so if I don’t push for things on their behalf they won’t do it for themselves. I very much am aware that it is a huge burden and thankfully my DH is very good at keeping me rational. My Dsis is very impulsive and likes to phone me up wanting to discuss some way of fixing everything for our parents, with such ideas as “why can’t we pay for them to build a new bathroom?”, or “Maybe we need to just pay for the rent on a house to get them out of their horrible place!” (In no way can we afford these things).

Thank you too rinse: my priority is to do what I can to protect my mum’s finances and buy them a house when that becomes possible to make them more comfortable. Although it would be a relief to get them into a more suitable place, I will probably have to physically go and pack up their things, hire a skip and fight to stop them taking absolutely everything in their big cluttered house with them!

I so much appreciate any advice and will update this thread with any new developments as a sort of diary for my own benefit, although it might be a bit too much for many to keep reading.

Sent you a DM

I'm sure you realise that without appropriate drugs, your father's stent will block and possibly kill him.
You are better off in Scotland. Personal care is free. Good Luck.

7to25 Yes indeed: I trained as a junior doctor and am fully aware of the risks of having a drug-eluting stent without taking secondary prevention. Despite these risks being repeatedly and clearly spelt out to my DF, he has absolutely refused to take any of them. As he has capacity to refuse treatment, it is his right to make poor decisions and I can’t do anything more about it. It does, however, illustrate why I wish to be in charge of major medical decisions affecting my DM if and when she loses capacity. It also shows a small part of my frustration in dealing with a completely intransigent parent who is in control and refuses to listen to advice or logic.

Hi OP my parents are in Scotland too, I guess you are aware the care at home is not means tested there, unlike in England, which is a good thing for your parents (if they will take any that is!)

My dad had an accident recently and I asked them on discharge to put in a SS referral for him that was start of Jan...they have given a care package for two visits a day already...seemed to be done quickly and didn't need to chase it up or anything.

Your mum would also probably qualify for attendance allowance and dad (?) for carer's for her. I rang the council and someone will come out and do that form for dad, probably same for you.

If I were you I would call Age Scotland who seem very good and ask for leaflets for your parents. and see if they will have a SS assessment for your mum.

The medical stuff must be frustrating given you are a doctor especially. It must be a worry he might do similar with your mum with the weird remedies and the like

A very small thing, but would a WhatsApp group for the 7 of you be a good thing? Not to be used without consideration beforehand, but if theres any risk of falling out between siblings it might be good to give say a monthly update on how things are going?

Hi OP, your DF sounds a very selfish awkward man 😕 I think it’s wonderful your mum has DC that want her safe and cared for, here in Scotland you should be able to easily buy her a comfy home with her inheritance. At present I would arrange for your local REACH to assess your mum/living conditions, also Alzheimer Scotland are a great organisation too.

Orange thank you for reading and your response. We have been fairly sure of mum’s diagnosis but she only saw the psychiatrist last week so it has only been ‘official’ for a matter of days so far. I am looking into what benefits and allowances she could get, as well as getting her assessed by SS, but part of the problem is that my DF will not accept carers in the house at this point. I am 200 miles away from my parents and struggling with migraines through my pregnancy while looking after four children, so I can’t just nip over to check on them, or attend their appointments, or have a chat to her CPN. It’s even difficult for me to have a clear idea of her main care needs as I’m really gathering them second hand and they don’t give me straight answers or admit to what they are struggling with.

They came to stay for several days over new year, and I honestly think they would quite like to move in to my home. If that happened, I would end up doing practically everything for them: cooking, laundry, shopping, driving, the lot. It’s not something I can possibly take on so I’m working hard to get them their own place and set them up comfortably and as independently as possible, hopefully with carers from the start.

Yes, the medical stuff is hugely frustrating. My DF is an anti-vaxxer and I had to get my immunisations once I had left home. He has spent a fortune on Forever Living products and if anyone had an illness they would be given Aloe Vera juice as a cure-all.

Permanent we do in fact have a messenger group for all the siblings as some don’t use whatsapp, but some of them ignore messages. I’m afraid a couple of my siblings are fairly self-centred as well, although I won’t say more as I don’t want this just to turn into a rant on how awkward some of my family members are! I have and will use it to send important updates but given the fact that I had very few replies even to my pregnancy announcement I don’t think it will be well used.

JKScot Thank you, I will look into REACH. I’m so grateful for people sharing their knowledge as it is new to me.

Oh I understand the distance thing as I'm in the SW near Bristol while mine are (separately) in different remote areas of Scotland.

Just a thought it would be PIP for your mum as AA for over 65s. But they could give PIP for dementia in fact think that would be a diagnosis would give an ongoing claim for your mum.

i have found with some phone calls things have been put in motion, for example I rang their local social services to follow up their referral, asked them to share info with the welfare person at the same council dealing with the AA referral, I found Parsley box a food delivery service based in Edinburgh which will deliver to them

However my Dad will have some help (hopefully) your issue sounds like the dynamic between them.

However as mentioned I found from a distance there's things can be done. Dad gets a cleaner in too once a week and goes to a lunch club twice a week. in his village. If you search inline their area there might be stuff like that in their area.

Age UK Scotland were helpful also. Best of luck with it all.

PS Mine too would like to move to me but not doing that, I too am encouraging them to have support at home. Not easy though! I would take care don;t do stuff for them or you will enable them to refuse further help and that will be a vicious cycle. Look after yourself.

Thank you once again orange. The distance is a big barrier, you are quite right. I also mentioned in one of my long posts above that a lot of my stress is in trying to get dad to agree to things. It really involves what I would call manipulation for the greater good, and giving him a lot of time to let a new idea sink in. I will find out if any referral has been made to SS and if not will make some phone calls. My parents have always been hopeless at admin so I will pursue the PIP and maybe chat to citizens advice about what else mum might be entitled to.

And yes: my DH has suggested building an annexe for them to live in as we have a large garden, but I know for a fact that I would be doing everything for them as I couldn’t stand to see them neglecting things. I’m struggling with this pregnancy as it is and having three more dependents would probably break me.

Do NOT build a bloody annexe!!!
There are multiple threads on here about the crippling exhaustion and ruination of families that move elderly parents in for care reasons!!
You have your own family, I’ll assume all very young, THEY need you the most.
Find the nice bungalow/flat and settle them there and get support in place, you will need to be very tough with your DF, your mum cannot suffer because of his stupidity and selfishness.

This might sound awful, but I agree I have seen others with bad tales about 'annexes'-

I would stand well back (maybe your siblings are thinking that also) support your mum how you can (with the PIP etc) but you need to think of your own health.

Unless of course, your DH wants to look after their every need

Oh yes, JK and orange, I absolutely do not want to have them in an annexe! They nearly broke me staying for 5 days: their dirty washing would be left outside my washing machine in the mornings and that evening I would be asked if it was clean and dry yet. They didn’t clear up after themselves (to be fair I stopped my mum from pottering round the kitchen because she drives me nuts putting things away in the wrong place); DF was fussy about his food; they didn’t let me get much rest at all and I was hosting ten extra people that week (whole family get-together over new year. I issued the invitation before I found out I was pregnant and couldn’t take it back after they had accepted). Basically I’m a mug, but I’m not prepared to be a mug forever. And my children are 11, 7, 4 and 2 with baby due in June, so I have a lot to do for them.