FIL has dementia, DH wants him to move in with us, feel trapped...

[lizbet316]

feel I can't tell DH that couldn't cope with having FIL here as I would put him in the position of having to choose between his father and me.
I know on a practical level that I just can't cope - DH has Multiple Sclerosis and although is ok at the moment has been very very ill and with relapses is likely to be again in the future. I found it hard enough trying to hold down a job, care for DH and look after DS (2.5yrs). FIL is at the stage where he couldn't be left alone so one of us would have to give up work and DS would have to leave nursery- but then DS would be stuck in house all day cos can't leave FIL.
I just know I can't cope - DH says "we'll manage" but like many men (sorry if bit sexist)he has never actually cared for anyone else and doesn't realise just how difficult it is - he's also never done 24 hours on his own with DS. I feel like DSs life would be ruined (kinda given up on my life already) but if FIL came here I know I would leave.
Please please does anyone have any advice? I feel so trapped. Whatever I do my marriage will suffer

I would very calmly make a list of all the things you're concerned about and when your DH says "we'll manage" say you've got some issues you want ironed out before he moves in.

If it'll mean the breakdown of your marriage if FIL moves in (and it sounds like it would - I couldn't live like you describe), you need to make him see how serious it is before any plans are made - but calmly, as I said.

Make a list on here - we'll help.

For instance, what support will there be from outside agencies?

Practical issues - can FIL feed himself? Dress himself? Wash himself?

Have you told dh that if FIL came to you, you would leave him?

Seems a fairly important point to make before your dh considers his position.

It's unfair on all of you not to tell your dh how you feel. He needs to know exactly how you think it will affect you all before he even begins to consider this.

Just say No. Evidently your DH has never cared for anyone who has dementia, or "We'll manage' would not be the first thing that sp[rings to mind.

Is he aware that people suffering dementia can become violent, moody, and paranoid, as well as steriotypically forgetful? Is he aware that your FIL one day might take it into his head to slap your son, under the impression that your son is someone else/has done something wrong/ no reason at all?

Is he going to be cleaning the faeces off the walls? The carpet? Washing the sheets, flipping the mattress? Chasing your FIL 3 miles down the road with a 2 year old in tow because FIL gets it into him to "GO HOME" that day?

What are the alternatives for your FIL?

As Colditz says, it's no picnic caring for someone with dementia.

I think what dh is subconsciously saying when he says "we'll manage" is "you'll manage" and that's just not fair. My dh is chronically ill and there's no way in hell I would take on a relative with dementia as well, it just wouldn't be fair to me or ds.

I'd suggest you get in touch with your local Carers Association - Carers Leeds are fantastic so I'm just hoping the other local branches are too whenever I recommend them. They should be able to help you with the practical issues of what support you could get if you did decide to go ahead with having FIL there.

The feeling of giving up on your life is one I really identify with as a carer. I've just been on a brilliant course with Carers Leeds called "All About Me" (or something like that) - it's really, really given me a new perspective on life. The Expert Patient Programme run something similar. It would be well worth your while checking out courses in your local area.

lizabet, I am very sorry to say you are the wife, therefore your dh should choose you. It is not about putting in an awkward position. FWIW I bet your dh hasn't really thought it throuhgh and it is probably a knee jerk reaction to things. Seriously you need to talk with him and even if needs be can you sit down with your FIL Dr and your husband and discuss things sensibly. Perhaps your DH doesn't know what is involved and perhaps ocming form a 'professional' he will see you are not trying to be difficult, just sensible.

Last resort, have a breakdown ;)

I wouldn't do it, not many of us here would and that is without the other pressures you are under

My MIL is in the early stages of alzheimer's and there is no way I could cope with her and children living in my house. And there's no way DH would expect it either. Why does your DH feel in a position to take him on? Is there more family locally? Has he looked into full time professional care (i.e. nursing homes?)

having another adult live in your house is difficultat the best of times. When that adult has mental/hpysical issues to deal with it's a huge repsonsibility and I think you quite rightly hear the alarm bells sounding for your relationship.

You must talk frankly to your dh about this- he vaguely saying "we'll cope" means in reality from what you've said "you'll have to cope"!

Personally I think your priority has to be with the best interests of your ds and you family Ie you, dh and ds- it is also likely under the circumstances you describe that having FIl living with you is the worst thing for him too- you are in no "state" to take on more caring, you are not qualified to deal with such a complex issue as dementure (I don't know the extenct of this but it will not get better it will only get worse and I hate to say it but the reality can become that your fil becomes a "threat" to your child eg. leavong on fores, gas rings etc etc or worse)

Please do not agree to this out of guilt- you will resent fil's presence and probably dh for putting this burden on you- it is a harsh reality but sometimes the strength lies in recognosing your limitations and looking for other ways to help your fil with professional help so that your family can enjoy time with him without the torture that dementure can unfortunately bring.

Please talk this out honestly with dh- I'm sure he hasn't really wanted to face the reality of what's happening to his Dad but that reality will be your life if you don't tackle it now! Take care - you are not a bad person for thinking like this you are a Mum who is coping already with big issues in her life and undrstandably wants life not to get harder.

It sounds like a very bad plan, formed by your dh's laudable desire to help his dad.

You have an overloaded plate already, I think your dh is asking far too much. The trick, as I'm sure you know, is to make him see that.

Someone with dementia is only going to get worse (see Colditz's post, 100% accurate imo.) I think you and your dh need to consider what is in your FIL's long term interest. Living with a 2.5 year old may be very stressful for him, not to mention how living with him could affect your ds. Your FIL may end up in a hospital/care home anyway and, to be blunt, it may be advantageous to his health to cut to the chase, so to speak, and find him a suitable home now.

I think you need to speak to health professionals about the disadvantages of your FIL living with you, and play those up to your dh.

FWIW I think your dh is blinded by love and duty, which isn't the worst thing in the world, but he just isn't being realistic. I've seen family members care for older parents, it's harder than you might imagine and I would hate to be that kind of burden to anybody. They can't go out without a major planning session, they can't go on holiday, they can't do anything spontaneously.

Is there anything to be gained if you go away for a weekend and leave your dh in charge of your ds? It might give him an idea of exactly what "We'll manage" might involve.

Dementia

1. Symptoms of dementia

Every person with dementia is affected differently and the way they behave can depend on many factors such as their personality, physical condition and the type of dementia they have. However, there are some common symptoms: In the early stages of dementia it can be quite hard to pinpoint exactly what the changes are. The person may suffer from a lack of concentration and be unable to make decisions, or be a little bit forgetful and confused. They may also get puzzled and upset about their behaviour.

In the middle stages of dementia, the person will become more forgetful, especially of people's names and recent events. They may become muddled about what day or time it is, have difficulty talking and understanding what people have said to them, and may put themselves at risk by doing things like leaving pans to boil dry on the cooker. They may also become angry, upset and aggressive quite easily.

In the final stages of dementia the person will be unable to remember what they have just done or said, and will not be able to recognise familiar objects and faces. They may become very restless and unable to express themselves or understand what is being said to them. They will be unable to carry out their personal hygiene tasks and may become incontinent. At some point they may also need to use a wheelchair, or may become bedridden.

It is important to note here that dementia is not often recorded as the cause of someone's death. This is partly because, in the final stages of dementia when people often become bedridden, the sufferer may die from an infection or virus such as pneumonia.

Obviously most people with dementia will need a lot of support and specialist care, particularly in the final stages. There are some services and activities available in the community particularly for people suffering from dementia, such as day care groups and lunch clubs.

Conditions such as a kidney infection, thyroid gland deficiency or a stroke can lead to someone displaying 'dementia-like' symptoms. A reaction to some type of medication can also cause these symptoms. So it is always important to see a doctor if someone starts showing signs of any of these symptoms as it may not be dementia they're suffering from but an illness that can be treated.

FROM HELP THE AGED WEBSITE

Colditz is right with what she says. it is very difficult to care for someone with dementia. Your PIL could have violent mood swings, he could get aggresive, put himself, or your child in danger by leaving the gas on, but not lit, or switching a fire on,etc.
You also need to consider yourself, if your DH has a relapse, you will have 2 people to care for.

3 including child

i agree with tribpot.

he's saying "you'll manage" and that's up to you to decide. sounds like you already have a lot on your plate and your fil will be a HUGE undertaking. and a stressful and constricting one at that.

if it were me, i'd have to say a big NO THANKS.

i missed that your dh has ms!!! in that case, it's a definite NO

Seriously, all considerations of feelings and duty aside, never mind the marriage, etc...

You cannot physically do this. You just cannot do so much. You cannot care for an old man with dementia, and a young man with MS and a small child with everything that goes with small children - one or two or all of them are going to get neglected, and you will land yourself in hospital.

Then what will happen to your son?

If your husband is so hell bent on your FIL getting the best care, you need to make it clear that the best care is not going to be you. With all the will in the worls, there are not enough hours in the day to do what your husband wants you to do, and it is so very wrong of him to put this onto your shoulders.

I know this is a bit vague but someone on here might remember the writer/article and be able to link to it but I read a brilliant piece in the Guardian about 6months ago. It was by a woman who looked after her elderly mother (who had dementia) as well as her young family.

It was a real eye opener as to what hard work it was. I took particular interest in it as my Gran had dementia and had reached the stage where she had become quite violent which had shocked me.

I was wondering whether an honest piece of writing like that, written by someone with first hand experience might give your DH a truer picture of what it would be like ?

Betty - was it Ros Coward ? I don't think so as her mum is in the early stages but thought I would throw the name out there.

Thank you guys SOOOO much. hearing what you have said makes me feel like i am being less unreasonable -
maturer - you are so right that it's about recognising limitations - after all we've been through in past year or so I just know that I would be a jibbering wreck and just as importantly I know I would NOT be a good carer to my FIL - I know i would just get cross at him.
In the past 18 months DS has had 2 operations, I had a breast biopsy (all clear thank god), DH has had radical treatment for his MS - Chemotherapy and two weeks ago he got meningitis due to immune system being suppressed by chemo. It's just ridiculous - I used to have a normal life - now I am one of these bloody drama - queen types to whom everything happens!!
FIL is very forgetful - won't eat or drink unless you keep reminding him (and that's after you've put the food or drink in front of him). He's also starting to lose his inhibitions - leaving toilet door open, not flushing loo, walking into the bathroom on other people. He has put his pjs on over his clothes a few times and gone to bed with shoes on. He seems to be going downhill very fast.

I agree with everybody else on here.

My dad has dementia, he has been in a home for the last two months now because my mum had reached the end of what she could do, but he was severely affected by then.

It very nearly brought my mum to her knees, and she didn't have anybody else to worry about apart from my dad.

Where children are involved as well, I would say it was impossible.

And even if it was possible now, your FIL will get worse.

You need to spell this out to your dh, tell him that you know that he wants to do the best for his father and for you and for your son, and the best thing is to get your FIL cared for by professionals.

Good luck.

Show him this thread.

Sorry, you are NOT being unreasonable.

This is physically impossible for one person to do.

It really is. It's also a real possibility that having your FIL in the home would be so stressful, your husband could relapse.

It's very hard for children to accept, but sometimes, a care home really is the best place.

People with dementia can also be very strong and easily overpower one female.

They can also get 'Sundowner's Syndrome', as colditz pointed out, and become very aggressive and even violent.

tribpot, no it wasn't a regular columnist, just a one-off article probably in the Family section. Thanks for looking though.

Lizbet, you're not being unreasonable at all.

lizbet, none of us think you are unreasonable at all. However you really need to get across to your DH how this is going to affect you all.

I worked as a care assistant in a home that specialised in Dementia care. After a 6/8 hour shift i came out physically and mentally exhausted. I could not do it 24/7. You shouldn't be expected to either.

Lizbet, I really feel for you

Look, care assistants get a bad press. And some are quite callous-seeming

But when it comes to keeping their temper, they are mostly A1.

I worked as a care assistant and senior care assistant, for 7 years, and never ONCE lost my patience with a resident. NEVER.

Because, you see, the shifts were shortish, and there were other people i could ask to see to someone if I had had my fill that day. The staff have support, something you won't have if you do this.

I know it probably isn't my place to push my opinion so strongly, and i know somepeople object to homes on many levels - but for your sake, don't.

Go and look at some homes - your FIL will have more independance and you can make him aware he is paying for a service - that way he will feel that his room is his, not his son's, and he will not feel like he is putting on anyone, as he will know that the staff are just that - paid staff.