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Elderly parents
Original poster

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

28 replies

CancelledCheque · 03/02/2020 18:45

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!

OP posts:
StrugglingWithJuggling · 03/02/2020 23:03

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...

Original poster
CancelledCheque · 03/02/2020 22:22

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.

OP posts:
Rinsefirst · 03/02/2020 21:36

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 Flowers . 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.