Dementia and marriage problems

[hyperborea]

Not sure what I'm looking for from this thread - just words of wisdom or shared experience, I guess. DFIL was recently diagnosed with dementia. He's not too bad so far - he's still reasonably 'with it', but has become generally more hesitant, uncertain and unsure of himself. DMIL has always been the more dominant character in many ways, but in the last few months their relationship has really deteriorated. I feel awful saying this, as I've always been very fond of DMIL, but frankly she's being pretty horrible to him at the moment. She's very impatient, constantly snapping at and criticising him, and basically not making any allowances for his diagnosis. She's acknowledged a couple of times that she knows she's not always as patient as she could be - but I don't think she has any idea how unreasonable and sometimes downright cruel she's being. I think there's also an element of denial, and her feeling that the best way of slowing his decline is to keep him doing the same things he always used to do for as long as possible - but then getting angry when he can't. Is this common - and does anyone have any sage advice? DH and I just don't know how to handle it. We're worried that if we tackle her about it we'll alienate her and possibly make things worse. On one hand I'm hugely sympathetic to her - she must know what lies ahead and is fearful for both their futures. But on the other hand we're desperate that his remaining years should be as pleasant as possible, and we're worried that things between them may be worse when we're not there. We don't live all that nearby, and both work FT, so getting over there to help is not as easy as it could be. I'd like to steer them towards some kind of help, but I'm not sure what - they've always been fiercely independent and I suspect might bridle at the idea of any kind of 'elderly' care (they're mid 70s), and I think the very concept of any SS involvement would horrify them. They have money that they could throw at this, if that makes any difference - but I don't know where to help them throw it!

Yes, I know a couple in this situation. I don't know what to do about it, either. I think the only thing you can do is keep on talking to her and trying to explain, OP.

Look for a dementia day centre where he could go to during the week to give your dmil some time to herself.

My DMIL was very much like this as my DF aged and became unwell. I think it's partly fear and partly frustration and I too worried about her behaviour when they were alone together.

Have they got some basic help like a cleaner and a gardener? Is there food being delivered. These things might take some of the strain away from her but might also provide some extra people to keep an eye on them and to talk to.

Do you r your DH have LPAs for health and finance for both of them? These are such incredibly helpful documents and if you don't, I would seriously consider broaching the subject before your DFIL deteriorates further.

Other practical things that might help are getting your DMIL to take to an Admiral Nurse about how she's feeling abs some tips for dealing with DFIL and to keep him active for as long as possible.

A PP mentioned a Daycare Centre. These are usually accessed through SS. He will need a Care Needs assessment usually to access any daycare. My DFriend's DM goes to one 3 days a week so that my DF gets some respite as she works and has her own health issues.

Is your DMIL also in touch with her local Carer's group?

I can totally understand how frustrating it is though. My DMIL has Vascular Dementia. My DFIL became very snappy with her but also refused to engage with any help offered as he wanted to care for her himself. No amount of persuasion could get him to see that he didn't have to do everything himself and she could actually be at home longer if he did accept the help. In the end she went into care after she was assessed during a Hospital stay after a crisis which is an all too familiar tale with couples where one has Dementia.

No specific advice, just a handhold. When my dad became terminally ill and had brain surgery, my mum was just awful. Tried to insist he ate healthily at all times, banned treats from the house, tried to insist he continue as he always had, waiting hand foot and finger on her. Nasty when he made mistakes. Just awful, and it was hard to watch.

My parents are in exactly the same situation - initially my mum was quite impatient, probably due to the stress of it all and because she was frightened. My dad saw a great HCSW from the Memory Clinic who in the course of their chat emphasised the need for patience and coping strategies which really helped.

My mum has been really trying to be patient and enable him with notebooks (which he has now lost!) iPhone reminders and a whiteboard with plans for the day.

I don't know how you’d have the initial conversation though - no one wants to hear they have to treat their husband like a child I guess. Maybe invent a nurse friend who gives advice through anecdotes?

I’m sorry to hear you're going through it too, I’m so worried about the future but who knows what will happen. ❤️

I was a carer for my ex for 20 years with a severe and enduring mental health condition.
I think telling a unvolunteered carer they have to be patient and calm etc is both unrealistic and unimaginative
As one of posters says, there is a fundamental switch in your relationship when you start to become a carer for someone with mental capacity issues . In a healthy relationship which meets both your needs you generally are both being independent and self reliant . When one of you needs support the other steps up temporarily and takes on the “parent” role to your child. Sometimes that might only last a few minutes, sometimes a day or 2 while you go through a crisis, sometimes many months. However, the OPs mother has now been pushed into that parent role for the rest of her life. Her needs form her husband will never be met form now on. Their relationship has been changed permanently. Yet everyone on outside will assume she should still behave like a loving wife - she’s not his wife in practice, more his mother.
It is not acceptable in society for a spousal carer to up sticks and leave the ill spouse. But I suspect most of us in that situation want to do that a lot of the time. It took me 20 years to overcome that guilt and realise being a carer in that situation is mentally damaging to the carer over the longer term.
She is most likely not wanting to admit to herself let alone anyone else, how resentful she is at being pushed into this situation, and people then speaking to her and saying she has to be kind or patient will not be helping her self esteem which will be shattering because of the lack of having a husband to support and care for her.
This sort of situation makes me so angry. We expect unpaid spousal partners to carry the burden of care and there is no acknowledgment in our social care structure that spouses are actual the worst people to carry out that care due to that relationship change and the mental anguish that is causing the carer.
Why should it be assumed that the spouse is the default carer by the OP and her DH (their son). That would be the convenient assumption from everyone that the spouse takes the burden due to vows of “sickness and health”. We sign up for those in our early adulthood with no conception of what that means once your spouse starts to loose mental capacity. You are asking the poor women to show superhuman powers of putting her own emotional and mental well-being and health aside and expecting that to have no impact on her behaviours.
Whoever the poor women was in previous post, that was lectured to be more patient , did anyone ever ask her why she lacked patience ..and I mean really asked? Was she offered therepy? Did anyone ever sit down and explain what was happening in the phsychological dynamics of her relationship and why she felt the way she did that meant she was impatient
I hope none of you are ever in that situation with your spouses. After 2 bouts of severe mental health issues myself I had to get out. I can’t ever forgive myself for that.

@Warblerinwinter What a thoughtful and insightful post. Thank you.

After 2 bouts of severe mental health issues myself I had to get out. I can’t ever forgive myself for that. As someone who left a partner, for good reasons, but while he was suffering from depression, I’ve come to terms with it by recognising that my presence wasn’t actually doing anything to help him with his depression.

Excellent post, by the way.

When my mum developed dementia, I honestly didn't think my dad would cope. But he cared for her at home till the day he died (with carers, cleaner, gardener, handyman) even though he was really frail. Was he impatient, shouty at times, frustrated? Yes. Did he do things not the way I would? Yes. But then I wasn't trapped 24/7 with someone who put his car keys in the oven, watched Dads Army on repeat all day, shouted at him, and spat her food. But he loved her deeply and was determined to not put her away, so my job over 15 years was to encourage him to use what help there was and be there for him. He only accepted help from outside when there was a crisis, and I did have to be really firm with him at times about that. But he did an amazing job that I couldn't have done.
So what I want to say is to cut your MIL some slack. She knows deep down what the future holds for her marriage and its only bad, and the process of grieving the loss of your spouse starts as they lose the million little things that make them, them.

@Warblerinwinter thanks for a clear, eloquent description of how being a carer 24/7 changes their relationship and how that can be unrecognised by others.

@hyperborea is she becoming house bound as she feels that it is safe to leave him alone?
Your DH and any siblings should be looking for ways to support both parents even if it's just going in on Sat/Sun to dad sit.

Thank you all so much for your incredibly eloquent and heartfelt posts, and I'm so sorry that some of you are going through or have been through similar experiences. I think the point about not signing up for this is right - a 20 year old spouse won't have any meaningful concept of what might lie ahead in 60 year's time, and a child being born to parents who will need care 50 years later of course has no say in the matter either! I guess the reason this falls mainly on spouses is practical - they are the one living in the same house, and they are the one who's generally always available. Don't get me wrong, DH and I truly do want to and intend to help - but he works six days a week, I work five, we have two kids, we have my own ageing parents who also need support, and we live a couple of hours away. As much as we intend to visit very regularly, there are practical limits on how much physical time we can offer - even if he went every week on his day off, MIL would still be the one there 95% of the time. Meanwhile, I've read lots of other threads where posters urge people not to take on too much care, otherwise it will limit the amount of outside help that's offered. But as @Warblerinwinter points out, that 'don't take on more than you can manage' advice never seems to be aimed at spouses.

Anyway, your thoughts have really helped me to think through how we need to approach this. (By the way, I say 'me', but I really do mean me and DH - he's not a shirker, he's just not on MN!). I think we maybe need to approach it by talking to MIL about what she needs, not what FIL needs. But as another PP said about her father, I think getting them to accept any help is going to be very difficult. They've never employed any home help at all, always seen themselves as the hosts, always had quite a 'dutiful' and self-denying attitude to life - life is about working hard, doing your duty, just getting on with it, etc etc. I can't imagine them accepting a cleaner, or accessing daycare services or support groups - it's just Not Done. I think getting MIL to accept help will be the hardest thing. Partly for those reasons, and partly because it will be an acceptance of FIL's condition worsening. At the moment the dementia is still very mild - he's able to be at home himself, or to go out himself to see friends or go to the theatre or whatever. But I don't know how long this will last. He's already very uncertain driving so has practically stopped doing it, and a couple of times has got slightly lost in a less familiar place (only temporarily, not irrevocably, but it's a sign I guess that his independence is beginning to reduce).

Re LPA, we've tried to broach the subject, but it was shut down very firmly. MIL's view is that she's got LPA for him, so that's enough. I'm not even 100% sure that that's true - and even if it is, we're concerned about what happens if something happens to her.

Oh, it's all so sad and so difficult. @Warblerinwinter you describe so well how MIL must be feeling. I was already very sympathetic to her plight, but the way you phrased it has brought it home to me even more. Really, thank you. I think the hext step is to talk to MIL about how we can help her, rather than how we can help him - and to try to bring up the LPA again.

@hyperborea

Thank you all so much for your incredibly eloquent and heartfelt posts, and I'm so sorry that some of you are going through or have been through similar experiences. I think the point about not signing up for this is right - a 20 year old spouse won't have any meaningful concept of what might lie ahead in 60 year's time, and a child being born to parents who will need care 50 years later of course has no say in the matter either! I guess the reason this falls mainly on spouses is practical - they are the one living in the same house, and they are the one who's generally always available. Don't get me wrong, DH and I truly do want to and intend to help - but he works six days a week, I work five, we have two kids, we have my own ageing parents who also need support, and we live a couple of hours away. As much as we intend to visit very regularly, there are practical limits on how much physical time we can offer - even if he went every week on his day off, MIL would still be the one there 95% of the time. Meanwhile, I've read lots of other threads where posters urge people not to take on too much care, otherwise it will limit the amount of outside help that's offered. But as *@Warblerinwinter* points out, that 'don't take on more than you can manage' advice never seems to be aimed at spouses.

Anyway, your thoughts have really helped me to think through how we need to approach this. (By the way, I say 'me', but I really do mean me and DH - he's not a shirker, he's just not on MN!). I think we maybe need to approach it by talking to MIL about what she needs, not what FIL needs. But as another PP said about her father, I think getting them to accept any help is going to be very difficult. They've never employed any home help at all, always seen themselves as the hosts, always had quite a 'dutiful' and self-denying attitude to life - life is about working hard, doing your duty, just getting on with it, etc etc. I can't imagine them accepting a cleaner, or accessing daycare services or support groups - it's just Not Done. I think getting MIL to accept help will be the hardest thing. Partly for those reasons, and partly because it will be an acceptance of FIL's condition worsening. At the moment the dementia is still very mild - he's able to be at home himself, or to go out himself to see friends or go to the theatre or whatever. But I don't know how long this will last. He's already very uncertain driving so has practically stopped doing it, and a couple of times has got slightly lost in a less familiar place (only temporarily, not irrevocably, but it's a sign I guess that his independence is beginning to reduce).

Re LPA, we've tried to broach the subject, but it was shut down very firmly. MIL's view is that she's got LPA for him, so that's enough. I'm not even 100% sure that that's true - and even if it is, we're concerned about what happens if something happens to her.

Oh, it's all so sad and so difficult. @Warblerinwinter you describe so well how MIL must be feeling. I was already very sympathetic to her plight, but the way you phrased it has brought it home to me even more. Really, thank you. I think the hext step is to talk to MIL about how we can help her, rather than how we can help him - and to try to bring up the LPA again.

Thank you for reading the response. I will just add something to what you’ve said as to your approach. Don’t just try to off load physical tasks form your MIL, to be honest keeping busy doing something half way productive like cleaning or ironing might give her time on her Own doing something mindless. The biggest burden is having to do someone else’s thinking, someone else’s planning, be someone else’s motivation . Someone else’s memory, it the sheer overload of having to think about everything. I can vouch it’s easier now I’m on my own, I’m not second guessing someone else’s preferences, having to think about how to keep them happy and entertained, picking up after them, reminding them of things, not being able to delegate even small tasks or emotional labour, as I say it’s like looking after a child with no responsibilities Think about what you can do to share that burden or at least make her aware she can all you to offload. You can do some of that form a distance. Helping her organise repairs, or sort out issues with bills, finance, organise a break for her, be the ones dealing with FILs appointments and care team etc. And then when you visit split yourselves up- one of you stay with FIL and do something he can cope with, and other one of you with MIL to make her feel normal and cared for. And it shouldn’t :Dan it’s MIL that always leaves the house, you just taken FIL out for the day to give her time in her own home without the burden would be a gift potentially.

Oh and I should say I’m sorry you’re in the situation, I hope you and your DH are ok 💐

Thanks again. We visited today, and things are both worse and better. Worse, because FIL seems to be declining quite rapidly. He's apparently been quite verbally aggressive to MIL over the last couple of days (not witnessed by us, and totally out of character), over concerns about her trying to take on some of the financial management. While we were there he was generally OK, but for a few minutes seemed very confused about who MIL was - as if she was effectively a stranger. We haven't witnessed anything remotely like this with him before. On the plus side, MIL seemed a bit more patient with him, and I think is starting to accept that she might need to get some more outside help now, even if it's just informal support at this stage.

So sorry to hear that @hyperborea. Is he definitely just being verbally aggressive? Over the last 12 months I've known of two Carers of spouses with Dementia finally admit that they were being physically abused, one is a tiny woman and her big DH was hitting her with his walking stick. It only came to light when he was admitted to hospital for something else and was physically violent to the staff.

Thank you. We asked her lots of questions, and I think it was just verbal aggression, and that this is so far the first and only time it's happened. As he gets more confused though, it unfortunately seems very possible that it could increase - hardly surprising I suppose if there are moments when you think there's a stranger in the house with you, trying to control your life .

dane makes a good point about wandering. Have you filled out the Herbert Protocol yet @hyperborea? It makes it so much easier if they ever do go missing.

What a total nightmare. My heart goes out to all of you. There isn't a way to get this sort of thing 'right' as it's so individual. You all sound as if you care hugely for each other. Also just another thank you to @Warblerinwinter - my husband died during one of his psychotic episodes and sometimes I look back and can't quite believe what my life was like then.

Thank you all all so much for your sympathy and advice. I think all we can do is try to put support in place, make sure MIL gets breaks, and take it one day at a time.

She is most likely not wanting to admit to herself let alone anyone else, how resentful she is at being pushed into this situation, and people then speaking to her and saying she has to be kind or patient will not be helping her self esteem which will be shattering because of the lack of having a husband to support and care for her.

It's horrifying, frightening, lonely and exhausting. 24/7.

@Warblerinwinter, thanks.

Get DFIL out of the house regularly to give them both a break, for starters.

There was a case in the newspaper where a man killed his wife with dementia with a butter knife. He just snapped. People were horrified but I think that all jury members should have a relative with dementia that they look after so they fully understand the stress it puts you under.

My mum has dementia and I live with her half of the week (my sister does the other half) and unless you're that involved with it, you just can't understand how draining it is. For example, if you visit someone and they ask you four or five times in an hour if you're all right, it probably won't bother you. But if you're there 24/7 and they ask you four or five times an hour, it drives you insane. Even though you know it's not their fault, you can't help but be irritated. And it won't be just one thing that they do. They'll put things in wrong places or hide things. They forget things or remember things wrongly. Things they could do one day, they can't do the next. Their hygiene slips. They cause you headaches and worry. And you know it's getting worse and it will get worse but you're hoping it won't. And every week you lose a little bit more of them. It's a devastating illness. It's a lot for your mil to be going through and she's doing it on her own. That's not a criticism of you at all but it's the truth of the situation. So when she gets angry, it's just the inevitability of living with someone with this awful disease.

It's really important that she has breaks, just looking forward to getting some alone time would mean so much. Even a weekend away whilst her son goes and stays would make a difference to her. Unfortunately because of covid, some things that were available have been suspended. But some places are doing respite care and are offering good deals because occupancy is down. Or just to get him to go to a day care club to give her a rest midweek might be an idea.

Also it's very stressful having people come into the house regularly so I can see how your mil might be resistant to that sort of help. We found having a private carer that you could build a rapport with better than a care company who send different people all the time. Be aware it will be difficult to get them to accept that (understandably - no one likes to have people nagging into your personal space) but it's better to put it in place earlier before they really need it than to scramble to get it in place too late. It gives them both time to adjust and as he deteriorates, it's easier to up the level of care.

I feel very sorry for your mil and your husband. It's a devastating disease.

But some places are doing respite care and are offering good deals because occupancy is down

That's true in our area as well. One of the local homes is offering 3 weeks for the price of two, which could mean that the Carer gets a holiday and some valuable time at home with having to have their usual caring responsibilities.