"I feel fine"

[Bets]

Lila raises an interesting point, i.e. how much interest/support should we expect from professionals? Since my husband's official diagnosis four and a half years ago, I/we have had contact with several people, e.g. CPN, health visitors for older people and carer support workers from local charities. Unless I contact them, nobody ever calls me to ask how are things. Only exception is a twice-yearly (yep, you read that right) phone call from the CPN and that is only because I specifcally requested her predecessor to call me every two or three months.

We see the consultant twice a year and the GP when I think it's necessary. Am I being unreasonable/unrealistic to think that contact, from "carer support workers" in particular, might occasionally be instigated by them, rather than me on those occasions when I need specific advice or information? Of the four GPs in our practice, only one has ever asked me how I was. The others studiously avoid (it seems to me) ever mentioning "the elephant in the room" if I have occasion to consult them on some unrelated problem.

Bets

 

[Lila13]

That support nurse was the one "professional" who seemed to recognize that one of the most important things to do to help dementia patients is to look after the carers. She interviewed me while the psychologist was testing my mother. She was also running a weekly group, but my mother wouldn't go to that.

 

[dmc]

my mothers cpn actually passed us in the hospital corridor just after mum was admitted said "hi" and carried on walking
i thought that she could have least enquired as to how mum was,
needless to say we dont phone her a lot.

 

[DickG]

Connie

I hope that things have improved and that you you have raised yourself up to "below par". What can I say to raise your spirits? not much I guess.

As an old friend of mine said just before she died "life's a bitch and then you die". She was such an inspiration and showed me how to look at life with a sense of humour, which she maintained to the last.

My thoughts are with you

Hugs

Dick

 

[jennifer3]

sorry your lionel is bad my hubby has been bad since the hot weather wonder if it's the weather to blame, as my hubby is now in hospital haveing gone very aggresive andviolent it took three visits by on call doctor to get him into hospital today he should have come home the sw put a care plan into practice 2 hours twice a week and to be put to beb and got up night 9 pm morning 7am he is awake and wandering most nights. he was due home this am but developed a fever ? infection where they have not decided yet so no antibiotics till tomorrow he fell out of bed after visiting aftrenoon we saw a bruise on his head tonight dr checked it but he is away in aworld of his own nurses have put a mattress on floor in case he falls again he cannot walk or do anything and they are still talking about sending him home as i am disabled life is going to get tough where do we go from here

 

[jennifer3]

why do i feel so useless

after two weeks in hospital my hubby has got worse with his walking and general condition SW says it is time for him to go into care as icannot lift him or move him about so i finally said to put his name down for our local care home thinking the vacancys are like gold dust and i would really like to try having him home with help even if he cant remeber who i am most of the time.
imagine my suprise on the some day to be told there is a vacancy in the dementia part i have seen the room and home very nice and they are going to assess him for the home on monday if he gets over this last infection and as he is impoving in his body if not mind,so although he will be fine in home and well looked after also i can go and see him every day why do i feel so much of a failure,

 

[connie]

Hi Jennifer, please don't ever, ever consider yourself a failure.

Horrible decisions to make, how much longer to attempt to care at home, or accept that our loved ones could be cared for as well elsewhere, enabling us to have some "quality time" with them.

My thoughts are with you, you know that what you are about to do is right.
Take good care of yourself, love

 

[Amy]

Hiya Jennifer,
There comes a time when we have to accept that the right place for our loved one to be is in a NH/Care Home. And I think it is often when the dementia progresses so that they are less stable and liable to fall, or require lifting - it seems so unfair. You cope for so long with all the other bits, and then the thing that finally makes you 'accept defeat' is that you can't lift them off the floor, or get them to the toilet. My mum is very passive, but totally dependant - and in January we realised that dad could just not physically cope any longer. My brother and I tried to take responsibility for the decision, to relieve dad of the sense of guilt and failure.
Jennifer you have not failed in any way. Finding a good home where your husband will be cared for; your commitment to be there for him in the future - you are doing the right and responsible and loving thing. You are ensuing that he is getting the care that he needs, that you alone are unable to give. That is no reflection on you - it is just the place that so many of us come to with this disease.
Jennifer it is going to be tough and heartbreaking for you, but you will get through it, and you have friends here to support you.
Love Helen

 

[daughter]

Hi Jennifer,

I remember that this is the way my Mum felt when a place in a local care home became available for Dad. We had expected there to be a longer waiting time before he went in to allow Mum to be a bit more prepared but I don't think any length of time would have been enough to eliminate that feeling that she had somehow let Dad down. She hadn't - Dad is in the right place for all his needs to be looked after. Although Mum spends less time in the home now, (she used to go in every day), when she visits, her care and attention continues to bring him comfort.

Even though everyone else can see how difficult things become it is still a very tough decision to make, but sometimes also a very necessary one. Thinking of you,

 

[linda a]

They dont ask

I find they dont ask how he is
I know they dont know what to say
And i might tell them so its best they go away.

 

[Lonestray]

Feeling top of the world

Hi fellow carers, reading your comments reminds me of the times I went through the same turmoil for years. My wife has two brothers and two sisters they live too far away to visit and never phone. We have two children, nine grand children and three great grand children. The only one who visits us is our daughter and what a joy that is. I don't feel bitter, stressed or flustrated. I acknowledge the way things are. While my wife was in the NH there was a lovley lady there who always asked me to about her son visiting her. Her daughter-in-law was her only visitor. She passed away after about six months. The following year I was pushing my wife around a DIY store, we bumped into the daughter-in-law. I expressed I sorrow at her sad loss, and it was a pity she didn't see her son. Her reply was something I'm sick of hearing, but then it's the mind set of so many "It hurts too much to see her, I'd like to remember her the way she was." I know they don't mean to be selfish but they are. In these last years I have worked out how to be stress free and sleep deeply every night and wake up refreshed and thankful for another day with my wife. How I long to ease so mush suffering and pain of others and bring some cheer. You can't change the past but can learn learn from it. You only have NOW,to make the best of. Can anyone say with certainty there is a to-morrow? Laugh at this crazy world. God bless Padraig

 

[Brucie]

on consistency....

"It hurts too much to see her, I'd like to remember her the way she was."

Yes, I hate that too, and have partitioned my relationships with friends on the basis of those who have in effect cut Jan out of their lives and written her into their 'history' memory - and those who remember her as she was, but value her enough to also want to be there for her now.

But we're none of us totally consistent. Yesterday in http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?p=40917#post40917 I wrote

For myself, I can't bring myself to go on the outing as it punctuates just how bad Jan's condition is now. In our regular regime of my visits at the home, I have reached a sort of peace through repetition, but take her out of those surroundings and it affects me profoundly. Selfish, but.......

Perhaps not selfish really, though others may disagree. I rationalise it to myself as not wishing to have Jan out of her normal zone and somewhere where she may become confused, but I also know that the walls I have built around my hurt can become breached when I see her someplace where even the most compromised of other residents can in some way give the appearance of normality, of being able to see, enjoy, get angry at... but where I have to move Jan to somewhere at the side and try to distract her from all that is going on. I'm so immensely protective of her, probably too much so!

 

[rummy]

I know they don't mean to be selfish but they are

I think they mean perfectly well to be selfish but have ways to justify it. I was so dismayed to discover that 60% of the folks in my Mom's NH never get a visitor. In my Mom's unit the five out of eight women never get a visitor and the others get one on rare occasions. Either my Dad or my husband and I visit my Mom every day. We alternate so that the other can get a break and sometimes we will skip a day. She is still part of our lives even though she is not the person she used to be. When she is gone, I will remember the old Mom and this Mom the same as I remember my daughter as an infant and an adult !
These selfish people should remember that what they do in this regard, is teaching their children and grandchildren how you take care of the older folk as they age and have health issues. What goes around, comes around as my dear Mom used to say!
Bruce,
I have the opportunity to take my Mom out of the NH to go to lunch or whatever. I haven't done it yet though. Part of me is afraid to try to have that level of normalcy with her for fear of how she will react to it. I am also afraid she will want to go home instead of back to the NH. Since her recall is down to about 40 seconds now, I just don't know if it is worth it or not. We take her into the NH garden area, or piano room or to sit on a park bench in the front of the building to watch the cars go by. Every time we do it, it is new to her and one minute after we have left, she has forgotten we were there. The way I look at it........for that moment in time, she enjoyed our company. so what if she doesn't remember it ! Perhaps in the next life she will tell me, "I know you were there !" Better than......."I know you weren't there !!"

Debbie

 

[Lila13]

So many people were asking me to go and look for their daughter/son etc. (obviously thinking I belong in that outside world where daughters and sons can be found), and of course I have no idea whether the people they want to see are within reach, selfish, or too far away or dead.

 

[clare]

How i wish i could visit my mum and brighten her day a little, or even bring a glimmer of contentment to her.
I can understand where you are coming from when you think that people are being selfish for not visiting but i feel i am selfish if i do go. As i have said before, when i visit i walk in on a settled,sometimes snoozing lady and by the time i have been there 10-15 minutes my mum has become violent and aggressive and very distressed. She thinks im having an affair with my dad and that everyone is set against her. She hits swears and generally abuses us and everyone around her.
So what good do we do, we only ease our guilt at not visiing. And we also have to think of our own mental state.
I do everything possible to not upset her, but im afraid until things alter (maybe she will get worse and the violence will stop) i keep in contact with the NH by phone but keep my visiting down.

So please dont judge those that cant visit, it isnt always the best thing to do. and this is from a daughter who visited her mum everyday before AD advanced.

 

[Lila13]

So often those selfish ones visit for a while and then hear from other friends, relations and neighbours that ... never visits, and probably think their visits weren't appreciated so why bother. I proposed a visitors' book for that reason but people didn't sign it and my mother of course didn't remember.

 

[Amy]

Hiya Clare,
No-one was criticising you, nor anyone else in your circumstances - but there are those who don't visit because "she won't know me anymore", or "I want to remember her the way she was". You are doing the most loving thing that you can for your mum, to minimise her hurt - your motivation is far from selfish.
Love Helen

 

[Kayla]

Visiting

I told the Nursing Home staff that I was going to be away for a week in September, for a Writing Holiday, and my husband would still be at home if there were any problems. They told me that sometimes families go on holiday for a couple of weeks without informing them, or leaving a contact number. In an emergency, they have no way of reaching the relatives. I had just been worried that Mum might wonder where I had got to, as I usually see her several times a week.

 

[jennifer3]

thanks all

ian is going into a home on friday from hospital. The home is very nice safe and best of all just down the road from me so i can get there on my electric buggy and take his cat in to see him cat is also missing him the staff are all local so know him. it is still hard but will get easier i hopethanks for all your care and good wishes.

 

[Áine]

So please dont judge those that cant visit, it isnt always the best thing to do. and this is from a daughter who visited her mum everyday before AD advanced.

oh clare! i just read your post ....... how horrid for you to be in this position. much as i felt exhausted visiting dad every day and got frustrated with him, at least on the whole I knew it helped or didn't harm.

i'm sure there are those who don't visit for "selfish" reasons ....... although there are also those who do their best but just can't face it. i've heard plenty of stories from well intentioned people who simply cannnot bear the pain of it all.

but to be in the position of wanting to visit, and not feeling able to without making mum more upset just sounds so awful for you.................

hugs
Áine