Trying to carry on

[Angel 4]

Good morning,
Here again! I’m after so advice or maybe just need to vent again… so we have 3 teenagers and things are difficult when it comes to them wanting friends over. My middle son (17) had asked if a couple of friends can come over later after football. My husband just doesn’t like it and says no. He doesn’t want anything out of his routine anymore. We have 2 rooms so he doesn’t have to be with the kids but it’s just causing upset on both sides and I feel like I’m stuck in the middle. I want the kids to have friends over and a happy time as normal as possible but I also understand that my husband isn’t the same person anymore… any advice?
Everything feels like a battle!

 

[Grannie G]

That really is a `catch 22` situation @Angel 4

Would it work if you used the separate room and asked your son and friends to try to keep the noise down out of respect for your husband?

I know my husband didn`t want visitors but we didn`t have teenagers at home.

 

[Violet Jane]

I really do feel for you. You’re in a horrible position trying to balance your husband’s needs / wishes with those of your children.

I’m sure that money is tight but if your children can’t have friends round then could you give them money for a treat instead (e.g. bowling or the cinema) or drive them somewhere (e.g. to a skate park or water park). Your 17 year old is old enough for you not to need to accompany him to the outings.

What do you think would happen if you didn’t ask your husband’s permission and the friends just turned up? People with dementia invariably say ‘no’ to everything and sometimes you just have to do things without consulting them first. He may grumble a bit but not be difficult.

 

[maggie6445]

This is difficult but your home is your son's home as well.
Is your husband's default answer no?
If it were me I'd let my son bring his friends home. Ask him to tell them the reaction they may get from his dad and why and take it from there.

Try and keep the boys away from dad apart from maybe saying a polite hello. Ask them to be respectfully quiet. I think it's only fair to give your son a chance to have friends round. He knows his dad so must be aware of the problem he could encounter.

 

[Blissy]

I agree with Maggie. Let your son's friends come round but don't tell your husband beforehand just act surprised when they turn up, introduce them and then let them go in the room you are not using. You will possibly find your husband makes no comment at all. This has work on occasions for me. Best not to make a thing of it.

 

[scotlass]

I agree with that...usually if you ask the PWD they will say no anyway, don't mention that your son's friends are coming round...

 

[Angel 4]

Thank you for all your advice… I hadn’t even thought about not telling him & just let the friends come over, I guess I’m so worried about upsetting him & then getting the silent treatment which was happening often but not so much recently. It’s all so hard to know what to do for the best. It’s all so unpredictable, today he hasn’t got out of bed at all.. my parents came to visit which he knew about but when I woke him this morning he said he didn’t want to get up. 😞

 

[Grannie G]

My husband once stayed out all day because he was unhappy about our visitors

. It was so embarrassing It was the elephant in the room. I had no idea where he was. I didn’t want to offend our friends by telling them the truth and they didn’t want to put me on the spot by asking where he was.

It was early days and if I knew then what I know now I would have been open and honest and told our friends my husband felt unable to socialise and felt a need to escape

He returned late at night He told me he had sat in Manchesters Piccadilly railway station all day.

That was the last time I put him under such pressure.

 

[Angel 4]

My husband once stayed out all day because he was unhappy about our visitors

. It was so embarrassing It was the elephant in the room. I had no idea where he was. I didn’t want to offend our friends by telling them the truth and they didn’t want to put me on the spot by asking where he was.

It was early days and if I knew then what I know now I would have been open and honest and told our friends my husband felt unable to socialise and felt a need to escape

He returned late at night He told me he had sat in Manchesters Piccadilly railway station all day.

That was the last time I put him under such pressure.

I always ask him if he’s ok with my parents coming so he has the option to go to his sisters if he doesn’t want to see them, I know that he doesn’t cope well socially now. He just doesn’t like anything out of his routine which is at home watching tv or shopping with me really. I understand that he can’t help this but it’s hard for me & the children.. I’m 47 and feel like my world has completely changed and will continue to get harder.

 

[Grannie G]

I understand that he can’t help this but it’s hard for me & the children.. I’m 47 and feel like my world has completely changed and will continue to get harder.

Young onset is the cruellest @Angel 4, especially when you have children still at home.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

I don`t know if there is any local support but there might be.

 

[Angel 4]

Young onset is the cruellest @Angel 4, especially when you have children still at home.

Find support near you

Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.

www.alzheimers.org.uk

I don`t know if there is any local support but there might be.

Thank you, I have looked but there isn’t anything for younger people living with dementia.
Thank you for your messages, it’s so good to know I’m not alone x

 

[annieka 56]

Angel 4, you are in such a horrible situation at such a young age and you're pulled in all directions but you can't be trapped in his world that is getting smaller and smaller.
My heart goes out to you.
Maybe ....if he wants to stay in bed when your parents come round, let him.
Are your parents aware and could one of them help by popping into his room to see him?
As for your teenage children, they must be able to have their friends round occasionally to your and their home.
They can explain a little bit about their dad maybe? Or just say he's a bit unwell and in his bedroom.
Can family life go on around him in your home without him kicking off? If it's the case he would be grumpy afterwards then that's one issue but if he would storm around and upset your teens with their friends, that would be different.

 

[Angel 4]

Angel 4, you are in such a horrible situation at such a young age and you're pulled in all directions but you can't be trapped in his world that is getting smaller and smaller.
My heart goes out to you.
Maybe ....if he wants to stay in bed when your parents come round, let him.
Are your parents aware and could one of them help by popping into his room to see him?
As for your teenage children, they must be able to have their friends round occasionally to your and their home.
They can explain a little bit about their dad maybe? Or just say he's a bit unwell and in his bedroom.
Can family life go on around him in your home without him kicking off? If it's the case he would be grumpy afterwards then that's one issue but if he would storm around and upset your teens with their friends, that would be different.

@annieka 56 Thank you, I do feel like I’m trapped in a world that is getting smaller and one that I never thought I’d be in at my age..
Family life does go on to some extent but it’s a struggle to please everyone!
Best wishes to you x

 

[YARAMAR]

Good morning,
Here again! I’m after so advice or maybe just need to vent again… so we have 3 teenagers and things are difficult when it comes to them wanting friends over. My middle son (17) had asked if a couple of friends can come over later after football. My husband just doesn’t like it and says no. He doesn’t want anything out of his routine anymore. We have 2 rooms so he doesn’t have to be with the kids but it’s just causing upset on both sides and I feel like I’m stuck in the middle. I want the kids to have friends over and a happy time as normal as possible but I also understand that my husband isn’t the same person anymore… any advice?
Everything feels like a battle!

Hi, I am sorry for your situation, your husband or your son. I would tell your son to have his friends over and enjoy the time, you might enjoy it too. Your home is for ALL OF YOU, with no exceptions, and if your husband is put out then you can tell him other people have to be considered. Best of Luck. Yaramar

 

[Angel 4]

Hi, I am sorry for your situation, your husband or your son. I would tell your son to have his friends over and enjoy the time, you might enjoy it too. Your home is for ALL OF YOU, with no exceptions, and if your husband is put out then you can tell him other people have to be considered. Best of Luck. Yaramar

Thank you, I too feel that it’s our home & not just his.. everything is changing so much but I just want the kids to have happy memories as much as possible.

 

[annieka 56]

Thank you, I too feel that it’s our home & not just his.. everything is changing so much but I just want the kids to have happy memories as much as possible.

I hope they will too.

Perhaps during all of this your kids might find some true friends/kindred spirits.
When we started this journey 10 years ago one of my sons was in a Sunday league football team and 2 or 3 of the other boys were in similar situations - or at least with 1 parent who needed a lot of support and whose needs were dominating the home.
They are still friends to this day though not playing football! One who works locally has become someone to call on to be the second person to help get my husband off the floor when he misses his seat and ends up on the carpet . Something his 3x a day carer can't do for insurance purposes.
Good luck to you all x

 

[JaxG]

I am so sorry for your situation, it's bad enough when you're older, but for you and your husband it's just so unfair when being so young. As others have said, it is your home and your sons' home to, and you and your sons deserve to be able to enjoy your home and not become completely isolated. On my part, over the last 5 years I have learnt to just carry on, I don't tell my OH what's happening because he can't remember fully and becomes agitated, and it is the 'idea' of it that has proved to be the problem. It's hard because you want to treat the PWD as you have always treated them, consulting them over decisions, but their decisions are not rational, and you and your children need to find a way to continue your lives, your sons need to be able to have friends over. It does feel as if, as carers, we are expected to completely put our own lives on hold and devote every waking moment to the PWD. Since you have two rooms, maybe make sure your husband is comfortable in the other room - TV, books, snacks, drinks so that his routine is not disturbed too much?

 

[Kevinl]

No secret on here things got so bad I/we packed our youngest then 16 of to live with his big sister 150 miles away, she's been his stand in mum for over half his life now.
We picked each other as partners, they didn't pick us as parents.
3 teenagers alone is a nightmare let alone AZ in the equation, doesn't bear thinking about. K

 

[Angel 4]

No secret on here things got so bad I/we packed our youngest then 16 of to live with his big sister 150 miles away, she's been his stand in mum for over half his life now.
We picked each other as partners, they didn't pick us as parents.
3 teenagers alone is a nightmare let alone AZ in the equation, doesn't bear thinking about. K

This is true.. it’s so very hard kids alone but now with everything dementia brings I’m struggling.

 

[Angel 4]

I am so sorry for your situation, it's bad enough when you're older, but for you and your husband it's just so unfair when being so young. As others have said, it is your home and your sons' home to, and you and your sons deserve to be able to enjoy your home and not become completely isolated. On my part, over the last 5 years I have learnt to just carry on, I don't tell my OH what's happening because he can't remember fully and becomes agitated, and it is the 'idea' of it that has proved to be the problem. It's hard because you want to treat the PWD as you have always treated them, consulting them over decisions, but their decisions are not rational, and you and your children need to find a way to continue your lives, your sons need to be able to have friends over. It does feel as if, as carers, we are expected to completely put our own lives on hold and devote every waking moment to the PWD. Since you have two rooms, maybe make sure your husband is comfortable in the other room - TV, books, snacks, drinks so that his routine is not disturbed too much?

I feel like we all have to put him first all the time.. but that just doesn’t seem right or fair on the kids, I’m stuck in the middle of such a hard situation!
Thank you for your reply xx