Do you get help from close family ?

[ike]

For people caring for their spouse, how much help do you get from close family , my wife has 2 daughters and they come to see their mum once a week each for about a hour and a half, personally i think its very poor seeing they both have plenty of time on their hands , or am i expecting too much My wife has late stage V dementia and is in very poor health ]

 

[canary]

I dont get any regular help at all.
Our daughter comes to visit for the day bringing her young son about once every 6 weeks during the school holidays and she phones once a week, but its not help. She did come last week when I reached a dreadful low and she helped get one or two things sorted, but that was in response to an emergency. I havent seen our son since he and his family came down to visit on my birthday in May.

I excuse these two as they dont live locally and have young children, but OH has a brother who lives in our village and I have only seen him a few times in the past 6-8 years and nothing of his family. It is very sad as we were once close.

Im afraid it seems to be the norm that friends and family desert you once dementia comes into the mix.

 

[ike]

My wife has brothers and sister who all live close by 1 brother lives 8 doors away from us , we never see them and the one who lives close we see him if we visit him , such a shame like you say how they desert you once dementia comes to the mix, we lived in Spain some years back and that is a very family orientated country they would not desert someone with dementia

 

[sapphire turner]

My husband’s children live far away, and my daughters all have small children. I see my daughters and their kids fairly regularly which is lovely but they don’t have much spare time to help me in the house. Luckily I have a carer coming in 2 mornings a week now so I can get more stuff done myself.
A lot of former friends keep away now which is a shame….. anyone would think it was catching eh 😹

 

[Anthoula]

My OH`s 3 daughters have almost disappeared off the planet since he received his dementia diagnosis. The 3 of them ( safety in numbers!) visit just once or twice a year, only staying for a bare couple of hours, and when they leave say "It is good to see him doing so well"!!!

 

[Cardinal]

My younger daughter will do anything for me but she lives 8 hours away. My older daughter lives locally but will only help if it’s convenient for her. My brother will drop whatever he is doing to help if I ask. No one helps regularly. I only have help if I ask. No one ever volunteers to help.

My husband is still in mild stage and so far his progression is very slow. Except for having almost no short term memory he is able to do almost everything for himself. I just need to remind him or leave him a note.

I have found that not only do most people desert you but when you do see family or friends they treat your PWD as if they don’t exist. My husband will be sitting right next to me and people will talk to me and not say a word to him. My husband’s verbal skills are normal and he would love to have a chat with them. He’s still a person.

 

[extoyboy]

My wife has two adult daughters (my step-daughters). One lives about 100 miles away and doesn't have a car but does catch the train over a few times a year with the grandson for the weekend (birthdays, school holidays etc). The other lives just a few miles away and we meet up most Sundays for a walk around the local country park.

As I see it they have their own lives and they became carers for their late father when they were teenagers so I don't want them to go through that again with their mum. My wife has carers twice a day (alz/dementia is only a small part of her health problems) but we didn't book them last Christmas as the daughters were here to help. We discussed it this year and have decided to just use the carers this time.

I've never been one for socialising or maintaining friendships so they are the ones that help me maintain my sanity - I call the furthest one every week for a chat (she vents about work, I vent about care) and, as above, usually meet the nearest one every week - again for a chat/vent.

I try to have a weekend away by myself once a year and I also visit the furthest daughter for the weekend a couple of times a year (this year we also went away together for a weekend break) so her sister mum-sits which is a great help for me.

I've been my wife's full-time carer for 3 years now. When the Alzheimer's began manifesting itself about 2 years ago that was a particular low point for me and without her daughters I'm not sure what would have happened. They know how much they mean to me and I always refer to them as my daughters in conversation.

My wife also has two younger siblings who live within a half hour drive but we barely hear from them.

 

[Agzy]

I dont get any regular help at all.
Our daughter comes to visit for the day bringing her young son about once every 6 weeks during the school holidays and she phones once a week, but its not help. She did come last week when I reached a dreadful low and she helped get one or two things sorted, but that was in response to an emergency. I havent seen our son since he and his family came down to visit on my birthday in May.

I excuse these two as they dont live locally and have young children, but OH has a brother who lives in our village and I have only seen him a few times in the past 6-8 years and nothing of his family. It is very sad as we were once close.

Im afraid it seems to be the norm that friends and family desert you once dementia comes into the mix.

Sounds almost a mirror image of me and Paulines sons, @canary

 

[Old Thing]

We get very few visits from family or friends and when they do visit it feels like they're just fulfilling a duty. The very worst thing is when they say how well my husband is doing. I've tried explaining the "host syndrome" to them but they make me feel as though I'm exaggerating his problems. I've even had one of them say he's just ageing and hasn't got Alzheimers at all!
I long for someone, anyone to understand.

 

[Lawson58]

My husband is English and his siblings still live there. They are lovely and supportive but obviously can’t do much. But they do have long Skype sessions regularly.

His sons are also in UK but have not contacted him for years, nothing to do with dementia, just always wanting us to lend (?) them money and I have refused to go there. His granddaughter is the same and no idea of his grandson.

My own two children and SIL would do anything for me but my daughter has had two rounds of surgery and SIL requires ongoing monitoring for past cancer and has his own oldies to care for. My son works long hours of shift work some distance away.

So life gets in the way sometimes and mostly I don’t wish to burden them with my troubles, those being more about my own state of mind rather than OH’s declining health.

 

[GillP]

We didn’t get many visits in the early stages (2018- 2020) which made me cross - but I bottled it up. As my late husband deteriorated they visited a little bit more but not enough in my view. At first I excused them because they live 100 miles away, have jobs, family etc but then I realised that they were also seeing other family members and having lots of holidays, weekends away etc. Once in very late stages visits did increase. I love my stepdaughters but there have been times during the past few years when I didn’t like what they were doing.

 

[Chizz]

I have three children, all of whom used to live not too far away. However, jobs, families, etc, now means that
- one lives 240 miles away, but she comes to stay for a couple of nights every 5 or 6 weeks or so - to check on me, and we speak on phone every week
- one lives 25 miles away, but doesn't have a car. We speak about once a fortnight, and he comes once in a while during weekend. About once every 3 or 4 months, he takes a day off work, so I can go out on my own for a full day
- one lives 11 or so miles away, but doesn't have a car, and uses the train. He comes every Thursday evening so that I can go out for about 3 hours to play bridge
(I also have a sitter from the charity Mind for 3 hrs one morning per week.)
One granddaughter (aged 26) will visit by train occasionally (when she is not in her office) for a cup of tea and a chat and to see her grandma, which is nice, but isn't respite.
All in all, bearing in mind they have lives, jobs, families. etc,, I think that's pretty good and as much as I can expect.

 

[Duggies-girl]

I looked after my dad, I have a brother who basically didn't want to know unless it concerned money. I was driving back and forth for some years before I had to move in with dad. My brother lived a five minute walk from his dad but managed about 2 minutes every couple of weeks but it had always been that way so I knew where I stood.

It's all very sad.

 

[Skylark/2]

Can I just add to what has already been posted.
I care for my husband , just me, no one else 24/7 365 days a year. My husband has a sister who lives just around the corner plus nephews and nieces. His sister, never contacts us, his nephew and his wife live about 5 minutes drive away. We have had no contact since Covid. His niece lives close by and she is the only one who pops around occasionally and recently invited us to her daughters 21st party. We had a good time but again his sister totally ignored her brother, even though they were in the same room. Before Covid and his dementia diagnosis we did so much to help and support his sister when she was getting divorced. I wonder if she remembers how her brother ‘ had her back ‘ then.
we have 2 sons, one living in the States, the other one a couple of hours drive away. The son in the States has a young daughter ( our granddaughter) and we have a long chat once a week via Skype, the other son phones for literally 2 minutes every Sunday. The last time he saw us was a flying visit on his dad’s birthday in July. He very occasionally asks how his dad is ( mostly not ) and then tells me what to do! No practical help, he like my husband’s sister tells me I need help, a support group……….no what I need is family support!!!
Why oh why do some family and friends drift away as soon as dementia is mentioned………it’s not contagious!!

 

[Chizz]

Can I just add to what has already been posted.
I care for my husband , just me, no one else 24/7 365 days a year. My husband has a sister who lives just around the corner plus nephews and nieces. His sister, never contacts us, his nephew and his wife live about 5 minutes drive away. We have had no contact since Covid. His niece lives close by and she is the only one who pops around occasionally and recently invited us to her daughters 21st party. We had a good time but again his sister totally ignored her brother, even though they were in the same room. Before Covid and his dementia diagnosis we did so much to help and support his sister when she was getting divorced. I wonder if she remembers how her brother ‘ had her back ‘ then.
we have 2 sons, one living in the States, the other one a couple of hours drive away. The son in the States has a young daughter ( our granddaughter) and we have a long chat once a week via Skype, the other son phones for literally 2 minutes every Sunday. The last time he saw us was a flying visit on his dad’s birthday in July. He very occasionally asks how his dad is ( mostly not ) and then tells me what to do! No practical help, he like my husband’s sister tells me I need help, a support group……….no what I need is family support!!!
Why oh why do some family and friends drift away as soon as dementia is mentioned………it’s not contagious!!

No it isn't @Skylark/2 but they don't know how to deal with "it" (dementia) or would rather just ignore it, as that is easier and more comfortable for them. Their absence shows their interest in you!

We used to be in contact, mostly by phone, with my OH's two sisters, who live many miles away, and we only used to see them once, twice, maybe rarely three times a year. After my OH became ill, I realised that the phone contact was, in fact, always initiated by my OH who was interested in her sisters and their lives. So I thought I would leave it and see if they ever contacted us. One sister phoned once only since covid, and the other sister twice since covid. I feel I don't need a one-way relationship that is hard work and draining. I've decided not to phone them. It'll probably be last I hear of them ?! Who knows?!

 

[Duggies-girl]

No it isn't @Skylark/2 but they don't know how to deal with "it" (dementia) or would rather just ignore it, as that is easier and more comfortable for them. Their absence shows their interest in you!

We used to be in contact, mostly by phone, with my OH's two sisters, who live many miles away, and we only used to see them once, twice, maybe rarely three times a year. After my OH became ill, I realised that the phone contact was, in fact, always initiated by my OH who was interested in her sisters and their lives. So I thought I would leave it and see if they ever contacted us. One sister phoned once only since covid, and the other sister twice since covid. I feel I don't need a one-way relationship that is hard work and draining. I've decided not to phone them. It'll probably be last I hear of them ?! Who knows?!

Yes this is exactly what I have done with my brother, I haven't knocked on his door in the last two and a half years and I have not contacted him in any way since I delivered his last inheritance cheque. I have received one message since then in which he asked me if I would like to 'house and cat sit' for him while he and his wife go on a round the world cruise. No I wouldn't like to do that. I doubt that I will ever hear from them again but it has always been that way. You are right it was hard work and draining and I don't need or miss that.

 

[UncleZen]

We have one son who has basically dissapeared. He's moved to Glasgow (we're in Hampshire) to get away from his mum who has Alzhiemers (according to freinds). Nice eh.

 

[ike]

WOW , just WOW !!!!
I did not expect these reply's when i posted, all i can say is i know how you all must feel inside , and after seeing all this it still doesnt make me feel any better to think im not the only one in this situation , i wish you all well and my heart goes out to you

 

[Kath610]

For people caring for their spouse, how much help do you get from close family , my wife has 2 daughters and they come to see their mum once a week each for about a hour and a half, personally i think its very poor seeing they both have plenty of time on their hands , or am i expecting too much My wife has late stage V dementia and is in very poor health ]

Hello @ike my husband has late mid-stage Alzheimer's and we have 3 sons, two are married and have children. I have set up a family WhatsApp group for them and our two daughters in law, so can keep them all informed about everything that's happening, all at the same time. It's also possible to know when they have all seen the messages so they can't say they weren't aware. They all also see each other's responses.
I have also set up a separate WhatsApp group for wider family and friends - again, it means I don't have to trawl through lots of messages saying the same thing. You are right though, you certainly find who your friends are - certain people make no contact at all but others, often very unexpectedly, get in contact and offer help.
Would this idea be useful to you?

 

[Bettysue]

I’d second the idea of a Whats App group. I had one with family members as my partner’s dementia progressed when he was in a care home. We could let everyone know if we’d visited him,how he was, maybe send a photo . It was reassuring to us all and kept us in close contact.