Family support - or not

Grahamstown

Registered User
Jan 12, 2018
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84
East of England
His sister called this evening but has not visited since last November and cannot really understand what he has lost. Does he watch the sport, read, go for walks and when I say no, no, no, I am made to feel as if I am just not looking after him right. They have been promising to come all year and may have left it a bit too late because he didn’t recognise his brother in law or our old home in a photo, although he did recognise his sister. I don’t really mind too much but it’s a sad situation.
 

Linda G

Registered User
Oct 23, 2017
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0
The sad part is that it isn’t the help that is always needed, it is the emotional support that would make all the difference. I find that family don’t really understand what caring is all about. To me it’s not the extra work involved, although this can take its toll, it is the loss of the person you loved, even though they are still with you. I feel like someone came into my happy home and took away the husband I loved, someone whom I respected and was my best friend and replaced him with a needy child. I find myself saying at times “I hate him” which I know I don’t, I just hate this disease that took my adored husband away. Just a little phone call asking how ‘you’ are can mean the world. Someone to give you praise for doing a wonderful job would make you feel so much better about yourself. The loneliness is the hardest part.

I have so much admiration for every one of you carers. You are all special people who deserve some love and praise for the wonderful jobs you are doing.
 

jenniferjean

Registered User
Apr 2, 2016
925
0
Basingstoke, Hampshire
The sad part is that it isn’t the help that is always needed, it is the emotional support that would make all the difference. I find that family don’t really understand what caring is all about. To me it’s not the extra work involved, although this can take its toll, it is the loss of the person you loved, even though they are still with you. I feel like someone came into my happy home and took away the husband I loved, someone whom I respected and was my best friend and replaced him with a needy child. I find myself saying at times “I hate him” which I know I don’t, I just hate this disease that took my adored husband away. Just a little phone call asking how ‘you’ are can mean the world. Someone to give you praise for doing a wonderful job would make you feel so much better about yourself. The loneliness is the hardest part.

I have so much admiration for every one of you carers. You are all special people who deserve some love and praise for the wonderful jobs you are doing.
I agree with every word here. That is so true. I also find myself saying "I hate him" which isn't true. But he is just like a needy child. I couldn't have put it better myself.
As for a little bit of praise, well when we move house in March my daughter in law came to help. But it was when she turned to me and said I was doing a tremendous job and how amazed she was that I had coped so far. That meant the world to me, far more than any physical support could do.
 

Grahamstown

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Jan 12, 2018
1,746
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84
East of England
Dear Linda and Jenniferjean - Both these comments ring so true to me. I went to pick up mail where he used to go for lunch today and saw three of his old colleagues who were all so supportive in their remarks. However I had to broach the subject first because I think people are worried about being intrusive or saying the wrong thing. The other mistake that his sister makes is to imply that ‘he should be able to pull himself together’, although the efforts of my daughter to explain that he cannot do anything about the disease that is making him so inactive have had some effect. I met an old friend for coffee today as well, who looked after her husband through Lewy Bodies dementia and she really did know what it is like caring for a person. He died five years ago now but she still talked and talked about it because it makes such a deep impression. So we were able to understand each other which makes a big difference.
 

RosettaT

Registered User
Sep 9, 2018
866
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Mid Lincs
Linda G, that's just how I feel. I neither want nor would ask OHs children to be hands on or even sit with their father for an hour or 2 each month. However it would be nice to get a phone call perhaps once a month asking how he is, so at least I feel they care. That way at least I would feel I have someone to give emotional support.
 

Janie M

Registered User
Jun 12, 2018
77
0
The sad part is that it isn’t the help that is always needed, it is the emotional support that would make all the difference. I find that family don’t really understand what caring is all about. To me it’s not the extra work involved, although this can take its toll, it is the loss of the person you loved, even though they are still with you. I feel like someone came into my happy home and took away the husband I loved, someone whom I respected and was my best friend and replaced him with a needy child. I find myself saying at times “I hate him” which I know I don’t, I just hate this disease that took my adored husband away. Just a little phone call asking how ‘you’ are can mean the world. Someone to give you praise for doing a wonderful job would make you feel so much better about yourself. The loneliness is the hardest part.

I have so much admiration for every one of you carers. You are all special people who deserve some love and praise for the wonderful jobs you are doing.
@Linda G i couldn't have put this better myself . It's been 7 months since I've had any contact with OH Siblings, they always want to get together if it's someone's birthday but has to be at a pub, just can't get the message through that he gets confused with so many people being around, never mind drinking. I just don't bother now, like my sons said it's their loss. Think we all deserve a medal, but I'd just settle for a "how are you doing" and understanding that 24/7 care is no picnic!
 

Olliebeak

Registered User
Sep 13, 2014
151
0
Buckinghamshire
The sad part is that it isn’t the help that is always needed, it is the emotional support that would make all the difference. I find that family don’t really understand what caring is all about. To me it’s not the extra work involved, although this can take its toll, it is the loss of the person you loved, even though they are still with you. I feel like someone came into my happy home and took away the husband I loved, someone whom I respected and was my best friend and replaced him with a needy child. I find myself saying at times “I hate him” which I know I don’t, I just hate this disease that took my adored husband away. Just a little phone call asking how ‘you’ are can mean the world. Someone to give you praise for doing a wonderful job would make you feel so much better about yourself. The loneliness is the hardest part.



I agree with every word. It’s exactly what I meant about support. Thank you
 

Florencefennel

Registered User
Jun 11, 2018
62
0
I have been surprised and saddened by this post. My partner has a very successful son with two small children, a working wife and they’ve always had constant child care set up to enable them to have a nice life. My partner was diagnosed with fronto temporal dementia 18 months ago which has affected his personality and judgement so that he is no longer able to drive and spends his days asleep or staring at his iPad.
We have seen his son 4 times since then but always at a playground so the children are ok. He lives within 1 1/2 hrs drive and only phones once a fortnight. My impression ( I’ve only lived with my partner 9years) was that they were very close and I have been thinking that perhaps I’m not giving him enough information about his Dad but reading through these posts, I’m beginning to realise what a common attitude this is from family members. I have been offered a chance to visit a friend in France for a long weekend in October so I’m going to ask his son if he will have his Dad at his house so he can see the children at home and, hopefully, his son & wife will be aware of the problems. On reading this, it seems so petty to moan but it’s true, we just need our care to be recognised and appreciated.
 

Linda G

Registered User
Oct 23, 2017
56
0
The common factor here is the lack of emotional support for the carer. We all know our nearest and dearest love us, but they just really do not understand the emotional battle we are going through. When one looses a loved one through death people understand that trauma, but it is obviously difficult for people to understand the loss when that person is still alive. We are very proud people who do their utmost to cope with all the extra duties which are thrust upon us so therefore everyone thinks we are coping well. They just need to dig deeper to find the emotional wrecks within. You are not expected to mourn when your loved one is still alive.

Last year on a cruise and I had noticed this couple and it was obvious that the male had some form of dementia type illness. Later in the day we returned to our cabin for a rest when there was a terrible banging of drawers being open and closed shut followed by a female shouting at this person to stop it. He did not stop and in the end I heard the female yell that she couldn’t take any more and left the cabin, slammed the door and stormed down the corridor. I got up with a view to going after her when she returned to the cabin. All then went quiet. Later that day I was relaying this episode to a fellow companion who promptly said I should lodge a complaint! Words failed me, as if this poor poor woman needed that. What she needed was some comfort. I did seek this lady out later, did not mention that incident and made friends with her. Only carers themselves seem to understand.
 

Olliebeak

Registered User
Sep 13, 2014
151
0
Buckinghamshire
The common factor here is the lack of emotional support for the carer. We all know our nearest and dearest love us, but they just really do not understand the emotional battle we are going through. When one looses a loved one through death people understand that trauma, but it is obviously difficult for people to understand the loss when that person is still alive. We are very proud people who do their utmost to cope with all the extra duties which are thrust upon us so therefore everyone thinks we are coping well. They just need to dig deeper to find the emotional wrecks within. You are not expected to mourn when your loved one is still alive.

What a very insightful comment Linda G. I agree about mourning someone who is still there. A good friend of mine said just that to me about his wife, who was diagnosed with LBD in her early 60s, when I was just becoming aware we had a problem. It has stuck with me.

We are a select club. Perhaps we should wear a badge so we can recognise each other!
 

Graybiker

Registered User
Oct 3, 2017
326
0
County Durham
Slightly different scenario, but the person who infuriates me most is my mam’s cousin.

Mam is the eldest of 3 siblings and the only one still here. She and her cousin grew up in the same street, went to school together and have lived next door to each other for 50 years. Mam has been in a home for almost 2 years, her cousin has visited twice! Once on her 80th birthday and once on her and dad’s 60th Anniversary.

I have spoken to her numerous times and said how mam would love it if she’d visit as she’s the only person left who can talk about their childhood, which mam remembers very well . I’ve told her that mam often mistakes me for her. I’ve suggested she takes old photographs and just talks to mam about them. Nothing. This lady still drives and is physically fit, it takes 5 minutes to get from her house to the home. I’m stunned that she can’t find the time to go and see her.

My dad goes 3 times a week to visit, by bus. Not once has mam’s cousin, living next door, offered to give him a lift. He’s 86 and struggles to walk.

It beggars belief
Sorry, rant over