Married for 40 years really scared about possibility DH has dementia

[Ilovepastafortea]

Lon one I'm afraid.

For background, DH & me been married/together for about 40 years. He's 72, I'm 63. He's been retired for 12 years, I still have to work as can't afford to retire until I qualify for my state pension when 67. I work 15 hours a week - 3 mornings 5 hours a day 2 of which are in the office, one at home.

I've noticed that my DH has become increasingly forgetful - he loses keys, his wallet to the extent that I keep charge of his bank cards so that he can't lose them any more.

He also forgets when we decide something. Today he asked me to fill the birdfeeders, 15 minutes later I see that he's filling the jug used to fill the feeders. I ask why he's doing it - he says that he's going to fill the birdfeeders. I say, that I did them when he asked me to do them earlier. He had no memory of this. This is becoming a bit of a theme.

He does the bulk of cooking (he was a chef & had his own catering business, I'm a good 'home cook', but, as I work & he enjoys cooking, it makes sense. We will agree that he's going to make a stew in the slow cooker. Lovely. I come home from work to the scent of a stew, but he's also made a bolognaise sauce. I say 'I thought we were going to have stew this evening', he will answer 'no Spag Bol tonight', me: 'That's great, but what about the stew in the slow cooker?' Him: 'What stew?' Me: 'Spag Bol good, but what about the stew in the slow cooker?' Him: 'oops forgot about that one, will have to go in the freezer'. Yup fine but we have 3 freezers full of his meals. I suggest that we spend a month living out of the freezer - never happens because he does the internet food delivery & never takes account of what's in the freezers. I managed to stop him from buying another freezer from a neighbour who was moving, but it was a struggle(!)

I could go on as I have many examples.

Also his temperament has changed. He has always been temperamental & prone to outbursts when stressed, but recently he's started to call me names eg: this evening he lost his keys, I couldn't find them, asked him when he last had them & he said 'I told you when I had them you stupid bitch-they were on the kitchen table, I took them off because you wanted to clear it to serve dinner, & now I can't remember where I put them because you were hassling me' This is so unlike the way he's been throughout our marriage. I did retreat to the bedroom in tears & he came in to ask why I was so upset &, when I quoted him he said that he was sorry if he'd said that, but he was sure that he didn't say the words that he said & couldn't remember the argument only that he he couldn't find his keys. I said that he absolutely did say those exact words' He said that it he must have said that he did as I wouldn't lie, he maybe did & was sorry. All good.

I'm very concerned about him. I've managed to stop him driving as his car died & I've managed to persuade him that we only need one car & he's not insured to drive my car. But I'm under pressure to insure him to put him onto my insurance & he keeps threatening to buy himself a car which I can't prevent him from doing.

I think that given that he has experience of family members with dementia and that you have always had a good relationship you need to be open and honest and lay it on the line. I think that’s better than going behind his back and telling DD or the GP.

I would say something like. ‘I would like you and I to go to the GP about your memory. I have been increasingly concerned about x and y events. Maybe I am wrong and it’s nothing at all but I think it wouldn’t do any harm to check with a professional and it would put my mind at rest. Please would you do it? Let’s make an appointment now.’

I rather wonder if he is aware something is wrong given the family history but he is hoping desperately that it isn’t and burying his head in the sand.

My dad is a similar age and both his parents died of dementia. He often says that he would rather be taken out and shot if he gets it. It really is his worst nightmare. However I work in this area and deep down I know he would want me to tell him if I had any concerns no matter how much he dreads it. Sometimes he will check in with me in a half joking way about something. I dread the day that I might have to say to him ‘yes that is a bit of a worry’ but I know I will always be honest with him.

Your relationship sounds lovely and I hope that it is all OK and it isn’t dementia but the way you care for him shines out of your posts and he is lucky to have you to support him whatever may befall.

And yes both of you should get your wills sorted and LPAs in favour of your daughter (assuming you get on) asap. If he does have dementia then the worst nightmare is actually something happening to you and him lacking capacity. This is a scenario that few people consider but is a disaster if no LPAs are in place. Financial is essential. H&W more optional.

With all due respect that was your mum. This is OPs DH, (aka best friend and life partner). I am pretty sure marriage to OP also involves caring for her spouse in sickness and in health. I do hope you aren’t married as that would be an absurd commitment based on your post.

OP as others have said, go and see your GP and ask them to make contact with him for a „post-operative check up“. Also ensure that you have access to everything and POAs in place (his savings are also yours btw!). I wish you strength. It’s a terrible disease.

I think you need to talk to whoever would support you, he does sound like he needs medical support. And he’s not much of a best friend at all if you have been married for 30 years but you have to work till you’re 7 years older than when he retired because you can’t afford to retire but he could. There’s no partnership there.

Off topic but why does he think his savings are "his"? You are married so they are joint unless I'm missing something.

There is nothing to prevent married people from having their own bank accounts or other property. The legal presumption that all assets are joint assets only really kicks in when the marriage ends, and even then it is only a starting point.

DH & me have always had a joint account for household expenses (food, utilities etc), but our own current & savings accounts. ATM I have more money in my savings than he does as I have a good Civil Service pension which gave me a decent lump sum when I took partial retirement 3 years ago & also have some money left over from my inheritance from my parent's. Any major bills (such as large items of furniture, holidays) are split 50/50. For info this was mainly because DH had his own business &, since he put us into huge debt to do it, (we're talking about £700K in the mid 1980's - an eye watering amount, probably about £1.5m+ in today's money, we nearly split up over it) I said that I was going to protect myself & the children by having my own money & kept my civil service job for the same reason.

We have wills in place - usual everything going to surviving partner, then to the DCs once surviving partner dies.

We also have a POA in place with DD, husband, me & solicitor should the surviving partner be unable to make decisions. Our DD insisted on this as she didn't want to be solely responsible for the financial decisions for a potentially incapable parent & thought having a solicitor to validate any decisions that she made in case one of her brothers had an issue with her decisions - very sensible in our opinions. On the advice of our solicitor, she's able to spend up to £2k without their input which covers any emergency care for about 1 week.

We've also pre-paid our funerals.

When my mother died 5 years ago we sold the family home, gifted DCs & GCs the bulk of money & I bought our bungalow for about £200k in my sole name with my inheritance. As long as I live another 2 years, they won't have to pay inheritance tax, though we've had to pay tax on some of the money that we gave them. My will specifies that DH has a life-time interest in the bungalow at a peppercorn rent, but will belong to our DCs.

DH has a flat that he used to rent out, but it's empty now & yesterday he accepted an offer on it. He will have to pay some Capital Gains Tax on it, but that will be more money for his savings.

I have said things like: 'Darling I'm concerned about your memory <gave examples> perhaps we should both see your doctor just to check things out?' DH: 'No, nothing wrong with my memory' Me: 'But you forgot this, you've lost this, you reversed my car into the corner of the garage while I was at work & forgot that you'd done it' (BTW I've taken him off the insurance & now take car keys to work as the thought of him driving makes me sweat! He doesn't currently have a car of his own) DH: 'Are you trying to tell me that I have dementia?' Me: 'No, I'm saying that it may be something simple like a vitamin deficiency or another problem, but, possibly you may have the start of dementia & surely better to know sooner than later' DH: 'If I have dementia I don't want to know'. Me: 'But, my love, I need to know if you do so I can support you. You know that I love the very bones of you. You're my handsome sexy silver fox & I'm so proud to be your wife, but I would prefer to know if it's dementia or something simple like a vitamin deficiency or something that can be easily sorted'. DH: 'I'm not going to the doctor, I'm fine. I'm not talking about it anymore, I'm not discussing it anymore.' I left it in silence for a while then he said: 'Oh I bet you've talked about this with all your friends, no doubt put it on MN for all to laugh at as well as <DD's name> so all your friends & DD know that you're worried about me &, no doubt DD is going to 'have a word'. I thought that you would support me not under-mine me like this' Stomped off to bed, refused to cuddle me.

All OK in the morning as he'd forgotten most of the conversation except that I was 'accusing' him of having dementia. He remembered it was one of our GC's birthdays that day. Had he sent her a card or present? Umm, no, but I had. He went to ring is brother, forgot that he'd spoken to him 2 days earlier & was told that he was going on a 2 week cruise the following day. But he remembered to feed the dog, bring me tea in bed, so not such a 'moron' then. Rather aggressive all day pointing out all things he'd remembered as 'evidence' that he didn't have dementia. He's been the same today, except he put the bins out thinking it was Thursday, again said he was going to ring brother, again said: 'oh shit it's the 23rd, was <DGC's name's> birthday yesterday, I didn't send a card'.

I am going to have to find time to speak to DD next time we meet. Will be difficult as she & DH are very close-well she's our youngest after 2 boys & we all know about fathers & daughters, she's always been a 'daddy's girl' & is closer to DH than me. But I'm sure that I can engineer that while he takes DGC (both girls who love their Gramps) off while I have a chat with her.

Wish me luck.

'he put the bins out thinking it was Thursday'

Wondering if I'm going doo-layly here. Of course today is Thursday, I meant to say Friday. 😂

Your DHs reaction to talk of dementia is very common @Ilovepastafortea . It took five goes to get my DM to her dementia assessment, even though dementia was never mentioned, she didn't like all the questions she couldn't answer. Your going to have to be a bit more subtle to get your DH to the doctors I'm afraid. I wish you lots of luck with your DD, it's going to be very emotional 💐

Thank you. I'm thinking that I'm going to have to 'hijack' a routine doctor appointment.

DH may be upset with me, but it's for both our good.

Leaving is not an option. I married him for better or worse etc, I'm in it for the long run and have made that clear.

My mother, when dealing with my father's Parkinsons & dementia would joke that, she when she stood in front of the altar aged 21, and asked 'do you take this man...in sickness & in health' she should have asked 'what exactly are we talking about - may we establish parameters?'

My mother was an academic who attained her PhD at the age of 73.

She was a very intelligent & remarkable woman. She was the oldest of 7 children, the first to go to college-despite her father thinking that there was no point in educating girls, so she paid her own way through her degree(s)) and established a precedent that meant all her siblings went to university😍

I would have a chat with your daughter; she may well have noticed something amiss or not quite the same re her dad.

I would talk to the GP re your concerns beforehand from that see if they can get him to come into the surgery. He needs to see the GP with you also present. Behind those words of his is a man who is absolutely terrified about he potentially having dementia.

I'm so sorry. It does sound quite characteristic. As well as the excellent advice above (most especially getting LPA sorted ASAP for both finances AND health and welfare, plus speaking to your daughter discretely).

I don't want to be alarmist, but if he is becoming aggressive please take steps to keep yourself safe - keep your phone fully-charged and with you all the time and maybe have a bag to hand with keys, etc, in case you need to leave the house in a hurry, or lock yourself into the bathroom. Hopefully it won't come to this. A neighbour was recently hospitalised after his wife with dementia attacked him in their home (she was the sweetest lady imaginable before this wretched disease claimed her).

There is also a very friendly and helpful forum here, which might be helpful: Dementia Support Forum.

Very best wishes to you. xx

Edited - I see you've already got POA in place, apologies. Also, you can write a letter to your husband's GP outlining what you've written above, in advance of any appointment and ask them to read it beforehand. You could warn them that he may be challenging and afraid. If you are allowed in the appointment with him, try and sit behind him slightly so that the GP can see you but you're not in your DH's eyeline - that way, you can nod to the Dr or shake your head if anything your DH is saying is inaccurate without provoking/angering your DH. Once again, I'm so sorry. x

Thank you for this.

DH is only becoming verbally aggressive when under pressure. I see what you mean about potential physical aggression. I'm just under 5' tall & a size 6/8. He's 5'10 &, as an ex-rugby player is still much bigger & stronger than me.

I will take your advice. Thank you.

Oh my goodness this is dreadful advice. I really hope you never find yourself vulnerable and abandoned by people you thought loved you. Incredible.

OP sounds like a loving caring woman x

Bless you @Ilovepastafortea - and never forget: you are important too. All-too-often a spouse or caring partner can "disappear" as the care, love and support for the person with dementia (PWD) increases. You and your health matter as well. Look after yourself as well as your DH.

I'm sure that, within himself, he knows how lucky he is to have you. Try to remember that PWD often lash out and say hurtful things to the person/people they love the most. Possibly because, on some level, they feel safe and secure with that person and know that that person won't hurt them back. But that is scant comfort in the moment, or afterwards. If it is dementia, then it'll be the disease talking, not him. 💐💐

My suggestion would be to make an appointment to see your GP yourself and go on your own ( maybe during work time or just before/ after work so your DH isn't aware - or if you don't mind telling a white lie, invent something you need to see the GP for).

Then acknowledge to the GP that you know he/she can't discuss your husband' health with you directly but please can you just tell him/her about the things you are concerned about and would they please just listen. ( GPs have been happy to do this for me concerning my parents).

Ask the GP if they can possibly ask your DH to come in for a "general wellness check" and see how things go from there

It is a horrible situation to be in and I am sorry it is like this for you.

I'm sorry he's so resistant to getting medical help. You weren't wrong to raise it, you're trying to help him.

I think he knows and is frightened. There are medications that can help him though, my aunt and my uncle both had/have it and we were told that they know at the start.
My uncle’s behaviour has changed towards my aunt, he was so placid, easy going etc but now he can be very hurtful. E.g he thinks he drove to Canada, she will keep correcting him and saying don’t be so daft etc etc he gets very angry and says mean things to her. The rest of the family go along with him, then change the subject. He doesn’t get agitated with us.

I wish my mum was diagnosed sooner. Please do try and get him to a memory clinic appointment but only a head scan will truly show what is going on. I’ve been through it and I feel for you and him. X

A UTI that has lasted months?? (All the food in the freezers?)

It does sound a lot like the beginning of dementia, I'm so sorry OP. I would talk to him honestly as soon as possible, it might be impossible for him to acknowledge it, or you might have a window of it being possible for him to acknowledge and understand what's happening before the disease takes over and denial is all he can manage. If he can't face it with you it will be very lonely for you.

I would recommend looking up Wendy Richards, there are some videos of her and other recently diagnosed people talking about dementia on YouTube which could be very reassuring to watch together, and she wrote three books about dementia after being diagnosed, which show that it's possible to face it, cope with it, and have a dignified life and death despite it. It's unusual for someone to face it the way she did, but if your husband can, it will make it much less lonely and hard on you. It's a horrible disease and I'm so sorry.

I think, like someone else said, he knows something is wrong and is frightened. Before my mother’s diagnosis she said those exact words to me. 😔I’m sorry you’re going through this, it must be frightening for you also.

why are you not pooling money?

Sorry I hadn't seen your update when I posted. Him saying "If it's dementia I don't want to know' is cruel to you and means he would rather put the entire burden of this on you alone. If you manage to catch him in a loving and kind moment you could try getting him to see that facing this with you would be the greatest act of love of his life and the bravest possible thing he could do. But it does sound like it might already be too late and he would just forget and deny the conversation later even if he did agree at the time, I'm so sorry.

My MIL was utterly determined to resist medical help and getting a diagnosis, my DH thought he had got through to her a few times, but then it would be back to adamant denial again. Maybe the disease means this isn't a choice, it's impossible to know for sure.

Given the difference in your sizes you're going to need a lot of help managing as things progress, so the sooner you can get a diagnosis the better. And don't hesitate to talk to family and enlist emotional and practical help for you asap, inlaws delayed this from not wanting to talk about MIL behind her back, but all normal rules of behaviour no longer apply when you're dealing with this disease.

Sorry ignore my last post. I missed the update.