Family - Do they care? Why won't they listen ?

[connie]

Hello again Daisy, writing this whilst I am waiting for the paramedics....................
No carer in this evening. My son came for the early evening as the dentist was doing a home visit. My John thought he should be 'on hand'. (100 mile round trip for him)

Lionel was very unsteady, but fairly sociable so he went home at 9pm. Lionel wanted to go to bed just after 10pm, toiletted him etc, all going well until we tried to get into bed.
Suddenly he lost it..........ended up on the floor unable to move. So dialled 999.

At last, Lionel is now safely tucked up in bed...I have lots of help in place, but lifting I just cannot do. The local paramedics are so good, never grumble, and when they can get him upright again, I can manage him better than them.
Don't despair, ASK FOR HELP. Love Connie

 

[Lila13]

Hope the practice nurse, neurologist, psychologist, stroke doctor (and their secretaries) and Social Services can help you get the respite you need. And don't let anyone tell you to pick someone up.

Lila

 

[Dandy123]

This is a dreadful situation.

I would agree that the way forward is to get his family to stay for a while.

My sister who has been supportive from a distance greatly increased her support and understanding of my father's condition when she stayed with us for a long weekend. My brother does help a bit but he can not accept or deal with my father's illness.

Your approach with your family might be along the lines of "If I am doing such a bad job then you try it for a few days. I am happy to learn from you."

I am sure that Social Services would see that you were doing well. Of course they would acknowledge the facts of your husband's illness, and they might be a source of help. There is a carers' charity Crossroads who provide support for carers by sitting with the ill person so that you are able to get a break.

Do not let bullying over the house undermine you. As a married woman you have rights over it. It might help you to discuss the situation with the Citizen's Advice Bureau to set your mind at rest.

I wish you all the best. As a carer you are a special human being. Don't ever forget that whatever your family may say.

Russell

 

[maria29al]

I partly understand

Hi..so sorry to hear about all that you are going through. I do partly understand..my 2 sisters, one in the UK and one in New Zealand have never accepted that both my parents have AD. My father has spent the last 3 months in hospital after a viral infection and is now in a nursing home. My mother remains at home and is more and more confused daily. The sister in the UK lives 5 mins away from Mum but will not go and see her and hasnt been to see Dad at all. She has alienated all Social Workers etc by shouting and screaming abuse at them whenever they have called her and I have had the same from her in phone calls and emails..to the point of getting BT to barr all her calls. The one in NZ emails me sometimes with more rubbish. I am working, looking after my own kids and having to look after Mum and visit Dad on an almost daily basis. I am totally shattered and near to the end of my tether...the last thing anyone needs is the then total lack of support and bullying from relatives. I really sympathise. I have no one else to help me as I am single parent.
I think the idea of getting them to help whilst you take a break is a good one...but realise you have concerns about the house. I would feel slightly uneasy too.
I think you maybe need to get some legal advise..for now and also for the future should you so need it...its a sad world.
Anyway, if you ever need to talk...you know where I am!!
Take care and keep being strong.
Thinking of you
Marion
x

 

[Lila13]

My family do care, but there isn't enough listening going on.

I realise mine are not as bad as many others.

Lila

 

[DaisyG]

Accusations....

Dear All,

Thank you for your comments....


As far as 'accusations' are, I'm only slightly concerned.

I've talked to the Docs.... and they agree that any 'blood chemistry' work will PROVE that he does get his medications....

His weight (70kgs) ... speaks for itself.... Well fed !!


Washing / Showering - is more difficult to 'prove'.....


Still, we've got our diary/records ......
(I know I shouldn't have to PROVE my care.... BUT I want to 'cover' myself all the same).


Take Care,

DaisyG

 

[zan]

Daisy, If your husband isn't keen on respite and your MIL is so adamant that there is nothing wrong could your husband go for a short holiday to stay with your MIL. She would soon see what you are having to cope with but you wouldn't have the worry of having her in your house. Your husband might appreciate you more after being away from you. Have you had any counselling. It might be a good idea for both of you. You have so many issues that you need to talk about. Maybe it would be useful for your husband to try counselling too. His 'anger' might be a way of showing that he is still a 'man', still strong, still in control, when his body is telling him otherwise. It is so unfair for you to have to take all the strain of his feelings. Would he share them with a counseller, maybe a home visit for him while you had an hour to yourself out of the house.
Don't know if this is any use to you or not, but I'm thinking of you and wish you luck. Zan

 

[Brucie]

excellent suggestion from zan

 

[daughter]

(I know I shouldn't have to PROVE my care.... BUT I want to 'cover' myself all the same).

I understand Daisy, if I were in your shoes I'd be doing the same thing. I just feel sorry that you have had to go to these lengths. {{hugs}}

 

[Lynne]

2 good ideas from Zan, but ...

Zan:-
Daisy, If your husband isn't keen on respite and your MIL is so adamant that there is nothing wrong could your husband go for a short holiday to stay with your MIL. She would soon see what you are having to cope with but you wouldn't have the worry of having her in your house. Your husband might appreciate you more after being away from you.

Careful here; although it sounds just what M-in-Law deserves, think about whether Daisy's husband might be suffering from clinical paranoia. Following excessive influence from the outlaws, he might come back home worse than he was when he went! One would hope he would appreciate Daisy more, but it might go the other way.
What do you think Daisy? Obviously you know him best.

Zan:-
Have you had any counselling? It might be a good idea for both of you. You have so many issues that you need to talk about. Maybe it would be useful for your husband to try counselling too. His 'anger' might be a way of showing that he is still a 'man', still strong, still in control, when his body is telling him otherwise. It is so unfair for you to have to take all the strain of his feelings. Would he share them with a counseller, maybe a home visit for him while you had an hour to yourself out of the house.

If you can get a referral from your sympathetic GP Practice Nurse, I would say go for it, even if your husband won't go.
Agree with the male-ego angle Zan.

 

[holly48]

Hi daisyG

I am not suprised to hear how you are being treated by your husbands family, I have heard this many times in the past. It's hard for care assistants to accept the fact that families just do not want to know. A lady passed away over a year ago now at the time a gentleman came in to see her, he said who he had come to visit, we were shocked to hear he was her son. We thought she only had one son, for he used to visit her everyday, and would help her have a cup of tea and sit holding her hand, even though she never knew who he was. I remember asking my boss why this happens, she said some people just cannot face up to the fact that their mother father or relative have dementia. It's so sad and hard to understand how relatives can act in this way. I certainly do not agree with what your mother in law is doing to you or the rest of the family, there is no need to add extra burden to you. I am sure you are giving him full attention, more than he would get if anywhere else. You do need to push for the resbite care and maybe agree with him you are both going, then when he is settled you go. Book yourself away for a week, you deserve it. If when you get back the family dont like what you have done, then tell them well next time i will let him stay with you. I am sure they will become thin on the ground when they hear that. Regarding lifting, in no way should you be lifting him at all, you should enquire about a hoist to be fitted in the home, or as some people have suggested call 999. You are only young and it will not be long before you will be needing treatment for your own back!
Maybe the mother in law would like to come round and prepare a meal for her son, or take part in his personal care, give him a shave, wash him etc, we encourage families in our home to help with their relatives care. You will see a difference. If they feel the towels are too fluffy let them bring some. I do understand how frustrating it can be when a person is denying they have not been fed, because they have forgotten, if people do not take the time to read up on this then it will seem like you are not caring for him correctly. I wish you luck and keep posting.

 

[DaisyG]

Family !!

Thanks to everone who has given their time in this posting.


Regarding family...and HELPING out...

'Fraid it's a bit of a 'BIG joke'.
When we have been graced with one of their many rare visits, they 'don't like
what they see...'


His mum 'complains' about his dribbling (symptom from the stroke)...
Not streams I might add... Only a 'trickle' every now and then... when concentrating or attempting to read something....
I tease him and say "You've got a bit of a snail trail goin' on there" ... and pass him a tissue ....
SHE shouts out "That dribbling NONSENSE just HAS to STOP !!"...


She's even made the odd comment to me saying.....
"I see you haven't managed to get him to stop dribbling yet...
What exactly ARE you doing to get this thing hit on the head?"

( I could hit her on the head.... Only kidding !! I'm not in the least bit violent....)


We can only visit my husbands 1 brother, and his mum, as the others have
upstairs bathrooms only.
They don't see why they should put in an extra hand rail, just so their brother can go upstairs to the bathroom....
AND they refuse to let us have a 'commode'....
So, we just can't visit them....
I've said that I would take care of the 'waste'..... and they have said point blank that they do NOT want one of 'those things' ANYWHERE near their house !!

So it's 'pop-ins' only, because of the bathroom/toileting issues....


The houses we do visit....
won't even help him in and out of the car... or help him put his seat belt on...
or up and down the outside steps...


There is NO chance at all of family looking after him for any time at all.


They won't even clear a 'path' for him... Leave toys and clothes strewn over the floor.. etc .. etc..

(If it were my brother visiting, I would make his visit / stay as comfortable as possible ... and as easy for him as possible).


They don't like his 'toilet frame' in our bathroom.... they think it's disgusting and filthy... (IT MOST CERTAINLY IS NOT !!).
I've even been asked by some to 'remove / lift ' it for them so they can use the toilet themselves !!


They don't like the 'swivel bay - shower seat' either....
BUT without it, he wouldn't be able to have his daily soak / spray !!


I'm used to the 'visual digust' looks by family, on a range of things.
They don't hide it very well.....


It's such a shame that I appear to be the only one with any love and care to give.



Keep your thoughts coming......


DaisyG

 

[Amy]

Hiya Daisy,
Family is about a loving, caring community, so no loving and caring, no family. If they are any use to you and your husband, use them, if not you have to find other ways to cope, and don't go out of your way to accomodate them.
If MIL comments upset or disturb your husband in any way, then you need to ask her not to make them, and if she continues to, then not to call. You are there to protect your husband from those things that can harm him, if that is his family, then you still have to do it.
Take care.
Amy

 

[jakky]

hi DaisyG

not too sure if I`m on the right track here, but..

just maybe mum is not ready to accept, her little, lovely, cheeky boy, is ill, not yet anyway??

as a son, I imagine my mum would say things like "get on with it you soft lad" and "don`t do that , do this ", and "wipe that stuff of your face"
so maybe his mum is angry, scared and reality has yet to kick in...I don`t know, just a shot in the dark, (like most of this illness )

however, my thoughts are with you and hope you are sorted sooner rather than

best wishes and take care...

jakky

 

[Norman]

Hi Daisy g
what was your families attitude towards you and your husband before he got ill?
If it is any consolation to you I have found that for the relatives and friends who have "vanished",we have found many more nice people along our AD route.
The fair weather folks have gone and what we have now are golden people.
Thinking of you
Norman

 

[zan]

Norman, What a lovely term to use - the Golden People. I certainly have found out who the Golden people are in my life at the moment. When I was nursing an old Irish sister once told me that there is a piece of gold in everyones heart but you have to search very hard to find it in some of them. Our golden people are the ones whose gold is shining brightly for us now. Than goodness we have them. Take care, love Zan

 

[currywurst]

Hello Daisy

After reading your post Daisy I just feel completely angry at the way these people are treating you. I really don’t have any advice to offer but just wanted you to know that your post has really hit a nerve with me. I have really come to the conclusion lately that those of us who choose to care for our loved ones must be truly special people and must just have something ‘extra’ that others are missing, because I cannot believe that people can be so horrible. Although my own family are no where near as bad as yours, I too feel let down at the lack of support and understanding I receive. Maybe they are just misunderstanding of your husbands condition but Amy’s quote really summed it up for me.

Family is about a loving, caring community, so no loving and caring, no family. If they are any use to you and your husband, use them, if not you have to find other ways to cope, and don't go out of your way to accomodate them.

I hope that you manage to get some help.

 

[Stimpfig]

Hi Daisy

I have just read the posts in this thread and it seems like everyone else has already said what there is to be said but I would like to add the following:

In your first post, you mention that your in-laws want you out and want to have the house for themselves. It appears like they have an ulterior motive in treating you the way they are doing. I feel strongly that you should protect yourself legally from all angles first and foremost. If I were you, I wouldn't let them come in and stay while I am on holiday for the same reasons (funny business) Amy has suggested in an earlier post. I am not familiar with UK laws but you could run the risk of not being able to get into your own house when you return.

Since you are gathering some sort of evidence to prove that your husband is getting his medication etc., I suggest you also tape the telephone calls and file alongside all the medical reports proving that medication was given. I would even go to the extent of having hidden cameras to record 'care giving'. Yes, I know - as if you haven't got your plate full already but it's good to be armed (provided you think it is worth it for you).

I was just looking at all this from another angle - god forbid but should something go seriously wrong with your hubby, you would have all the evidence to prove otherwise if you are accused , and from your postings, it seems like your in-laws would go to any extent.

Pardon me if I have offended you in any way by saying what I did.