Family support - or not

[Olliebeak]

Does anyone else feel really let down by their family in this nightmare dementia journey?

My two sons are 38 and 40 and while my OH is not their real father (he was an alcoholic and died 30 years ago), he has been in their lives for around 28 years. One son lives about 15 mins away, married with two girls, a really busy job and heavily involved with the girls’ successful sport careers. The other is over 2 hours away, also married with 2 girls and a busy social life if their own and the children’s.

We don’t see very much of either of them. The distant son says he would always come and help out if I want some time off but they are busy and it’s never convenient. Plus if he brings the girls up here I want to see them! He says I can always talk to him but when I tell him some of the mad and infuriating things OH does, he thinks it’s funny!

The other local crew sometimes give him dinner if I get the chance to go out with friends or to the theatre, or they will visit him while he is on a respite stay but I always have to ask and it always sounds like a big favour they are doing. They never just offer. My son never just drops in, though he passes very near by on his daily commute. I have tried talking to that son but he said “you are a strong person, you will get through it”

I’m not sure if it’s that they really don’t understand what I am dealing with on a daily basis and how totally miserable I get or they just don’t want to deal with their own feelings.

My sister, who also lives a long way away, rang me last week. First time in months and I rang her last time. After 35 mins of her ailments, travel plans, work and family she had not even asked how I was. I made an excuse and ended the call!

Some friends are amazing. Understanding, supportive and caring but I feel quite resentful of my family.

 

[canary]

Im afraid families are often like this. My OH has family who actually live in the same village as us and I honestly havent seen them for nearly a year!
When my mum (with Alzheimers) was alive my brother didnt visit her for 3 years. He did turn up to the funeral though

I had to tell myself that at least they are not trying to undermine my decisions.

Im glad you do at least have support from friends. Can you get other help and support from other organisations, maybe from Alzheimers Society venues?

 

[Guzelle]

I’ve never had help from family. Our daughter has looked after him occasionally. I have 2 step children who have visited once in 3 years. They send him birthday cards and Father’s Day cards and text to see if we have received them! He now doesn’t know who they are and gets upset when the cards arrive.

 

[RosettaT]

My OH's offspring lives 20 miles away and we very, very rarely see him. When we do like you say it's as tho' he is doing us a big favour. I understand exactly how you feel.

Like canary says, as least I can get on with it.with no interference.

 

[marionq]

I have really mixed feelings about this. Our daughters have demanding careers and teenage children plus two of them are in London so what help they give is limited. They do phone regularly and in an emergency I think they would get here. To be honest I don’t want their lives blighted by dementia or their memories of their Dad too sullied by details of what looking after him for more than a few hours would mean.

This is where more objective professional help is I think the better option. I do agree that it is pretty thoughtless to phone up a carer and spend the time talking about yourself as @Olliebeak says her sister does and that must hurt.

 

[Andrew_McP]

I once said to a consistently skiving git at work: "I'd rather have your genuine, motivated help for one ******* minute than your grudging, enforced labour for a whole *******hour!"

Actually I may have used more asterisks than that. And to be honest, the hour would have been much more use than the minute, but you get the idea.

I saw him a few years later and he said he'd never forgotten what I said. Half a lifetime later, I still think the same way. Family and dementia have one thing in common... wishing they were different changes nothing.

Sometimes it's nice to dream though; maybe one day your dreams will come true. What does the song say? "You gotta have a dream, if you don't have a dream, How you gonna have a dream come true?"

 

[Duggies-girl]

I eventually got help with dad when I used the care home threat (It was all getting too much)

The thought of the inheritance being quickly whittled away was too much and help was offered.

 

[Baker17]

I have been let down by my OH’s son he has made false accusations about me managed to charm the SW worker which led to my OH being moved from a wonderful care home to one where the care is quite frankly disgusting. The latest development is that the manager of the current home wants my OH out the reason given is that they can’t cope with my OH, it’s been going on for two years and there’s no end in sight yet, to boot he doesn’t even visit daily as he said he would to the SW, once every three weeks if that for an hour. None of my OH’s family speak to me as they also have believed the lies.

 

[chippiebites]

I soon found out it is much better not to expect any support or help from family. It is much better to organise whatever help you can yourself.

 

[Donkeyshere]

When your emotional capital is being used up by those not worthy of it, keep it and spend elsewhere on someone who deserves it.

 

[Bunpoots]

I got very little help from my siblings while I was caring for my dad.

They keep asking about the inheritance now he's gone though...

 

[rhubarbtree]

Like marionq I would not want my children to be too involved with looking after my OH. It is my decision that he stays at home so, with the support of a few moans on here, I am prepared to get on with it.

They do offer to help but often come out with elaborate plans which will probably not work. Hopefully I am getting through to them that they should visit us without invitation and ask that they are prepared to accept us calling in to them if we are passing is the best help they can give. Last week when the sun returned we called in, had a cup of tea in the garden, quick chat with grandchildren and play with dog and were on our way. Best for everyone.

 

[jugglingmum]

There are many family members who don't help when they could eg if it is a parent and siblings don't help. I think the position of children is somewhat different. In my case my brother has left me to it with mum, not doing what he promised and stretching me beyond my limit, such that my kids and my OH suffered. But there is more to it than that.

One son lives about 15 mins away, married with two girls, a really busy job and heavily involved with the girls’ successful sport careers. The other is over 2 hours away, also married with 2 girls and a busy social life if their own and the children’s.

You don't say how old your granddaughters are, if their mothers work and whether they have contact with the other grandparents, because this has a massive effect on the family dynamics for your sons.

I have 2 children who compete at National level, one weekend in June my son competed in Bristol on Sat and Sheffield on Sunday (we are in Chester). For a couple of Novembers running we have waved at each other as I have driven back from Watford with son, as OH goes to Gravesend with dau on a Sat afternoon. Having 2 children with successful sporting careers is exhausting and very time demanding. Not only can you have multiple consecutive weekends of competition, but every evening is carefully planned to get the child to training, ensure they are fed on time, that they have done their homework (son is dyslexic so significant amount of input required), and the correct sporting kit is washed and dried in time for the next training session/competition. In my dau's case their is a significant amount of equipment maintenance as well which can take OH many many hours in a given week. We look on in envy at other parents who have active involvement from grandparents to lessen the load, even if it is picking children up from school once a week. We always had a mad dash home to try and pick up from childcare before 6 when kids were in primary school. Rare free weekends are used to try (and fail) to keep on top of housework, house maintenance, garden etc. I work part time and use my Thursdays to catch up with the washing I can't do the rest of the week, a token effort of housework, and non food shopping - we have very little spare time, going out for a meal together is something that took place before the kids started their sporting endeavours, about 8 years ago (we paid for babysitters).

My mum is in a sheltered extra care flat near me, but whilst I do her shopping we don't see much of her, I feel guilty but it is very difficult to fit in bringing her to mine to see the kids at a time that everyone is home and not too tired.

I think if your grandchildren were grown up your son's would be in a different situation but if they have school age children there is only so much they can fit in without breaking themselves, and this would be to the detriment of you, them and your granddaughters.

You say your son goes past on his commute, but this may be carefully timed to pickup or drop off a child, or in the evening to get them to training. I suspect he is juggling things around to fit in so that you can go out for a meal, and visit during respite, so it does feel like a favour to him, but he is doing it.

Enjoy your other son bringing your granddaughters up, a 5 hour round trip takes a lot. Many don't understand dementia fully, and I'm sorry he laughs at your tales of your husband's antics, sometimes these things are funny when not understood.

My OH has a poor understanding of my mum's dementia and when he picked her up for Christmas day last year he was amused by how she couldn't remember quite what was happening on the less than 10 minute journey - dau and I just rolled our eyes at each other because she has been like this for 4 years but he hasn't noticed.

Being realistic in what your sons can do, when they are likely very stretched in their own lives, and maybe starting a conversation acknowledging you understand how busy they are and setting out what would be helpful - and not expecting them to say they could do it might make life easier for them.

 

[Olliebeak]

Thanks for all your comments. I think my disappointment is much more to do with lack of understanding and psychological support rather than practical support. I do rely on professional help for anything more than an evening and thankfully I can still leave OH for short periods during the day.

Yes the sporting granddaughters who are 14 and 11 jugglingmum do take up whole weekends with competitions and they are training or coaching up to 6 days a week so perhaps I am expecting too much, although my DIL does not work and I do still help them out with lifts, school pick ups and financially.

And the round trip for the others is a tough ask. Their children are younger, and they are strapped for cash. I think since I wrote the start of this thread I have just come to terms with fact they just do not understand and I hope they never find out first hand what it is like.

 

[northumbrian_k]

I think that it is better to expect nothing thereby avoiding disappointment and unnecessary stress. It may be that my wife's 49 year old son has such a busy lifestyle that he can't visit her for more than 2 hours twice a year. But when we were still useful in looking after granddaughter etc. he somehow had more time for us, albeit that we were the ones who had to travel to see him. Maybe he can't face the reality of her illness, or she is low on his list of priorities. I don't want his help but I do think that he will find out too late that for her sake and his own he could have given just a little more.

On the other hand, the support that I have had from my sister has been magnificent.

 

[jugglingmum]

Maybe for the nearer ones an option would be to offer to do a regular swap and take granddaughters to training whilst they looked after oh.

That way you get a break, see granddaughters, possibly socialise with other taxi parents ( can be quite friendly ) and they learn more about dementia.

I am assuming both granddaughters do the same thing. Mine do completely different sports.

I think those not dealing on a daily basis with dementia rare understand

 

[Thethirdmrsc]

I think if you are not involved in looking after someone 24/7 it’s hard to see how a PWD is affected. My OH is going to a funeral tomorrow, and his son who is 52, is taking him, but doesn’t know what time he will collect him. Around 2 ish, isn’t good enough and make my OH anxious. This son lives and works 3 mins away from us, and visits us twice a year. His 3 grandchildren don’t bother about him at all. My 2 daughters help more and they live an hour away.
I have stopped telling anyone what he does or says. None of them are interested.

 

[Janie M]

Now @Olliebeak , why does this sound familiar? My OH diagnosed nearly 3 years and I just can’t leave him on his own. While our 2 sons are not too bad if I ask for help, his own siblings have been absolutely useless. I’ve had the “ if you need help” etc conversation but never see them from 1 year to the next. Have distanced myself now and when I need help, respite just going to get professional help.

 

[Donkeyshere]

Its all so familiar - and when they realise the money is no longer there they become invisible!

 

[northumbrian_k]

I’ve never had help from family. Our daughter has looked after him occasionally. I have 2 step children who have visited once in 3 years. They send him birthday cards and Father’s Day cards and text to see if we have received them! He now doesn’t know who they are and gets upset when the cards arrive.

It might be an idea to ask them not to. They'll feign surprise and hurt but that is preferable to upsetting your partner. Or you could just intercept the cards and messages and dispose of them. Birthdays, Christmas and so on do not mean anything to my wife so we have given up on them. My thoughtless stepson telephoned on his birthday last year and 'reminded' his mother by wishing himself a happy birthday. She was upset afterwards that we had not sent him a card.