Permenant care.

[wjoanne918]

Hi all,
my last few posts have been regarding mam's sudden decline. We had a meeting today at the assessment ward with mam's doctors ect. They told us that after their period of assesment they believe it would be best if mam was placed in a home on a permenant basis. I sort of expected this but it still hurts so much, my mam is 58 years old this is so unfair, i cant help feeling so bitter and angry at the world in general. I feel robbed, i feel my children have been robbed and to top it all off i feel i have broken my dads heart by asking her to be taken in the first place. He tells me that i shouldnt feel guilty for what i did but just looking at him i know how much he's hurting because i multiply my own pain by a million and then i know Mam is happier and more settled on the ward and this is probably the best for her, but i've been missing her for the past 5 years but now it feels as if she's completley gone. I'm off work at the mo and just cant even think of returning, i cant seem to think of anything the cpn has told me to go to the gp and ask for counselling and i've made an appointment for next week. I think the hardest part is knowing how much i'm hurting and that both my dad and sister are feeling the same
Thanks for listening, just needed to get it out.
Jo

[BeckyJan]

Hello Joanne,

I am sorry. Many of us here understand how much all this hurts. Your Mum is so very young and it must be devastating for you, your Dad and others in your family. I hope it gets easier as your Mum settles into care permanently and becomes adjusted to her surroundings. It is hard and I sympathise.
My best wishes

[BungleGirl]

It is a terrible time Jo. Please make sure that you don't return to work until you are properly ready to cope with it and I agree with the suggestion of counselling, I wish that I had seen a counsellor much earlier. Although I went to see a counsellor about something completely different, we spent a lot of time talking about Mum and Alzheimer's etc. It really helped me. I would tend to move the conversation away from the subject and now that other things in my life have improved I am thinking about going back to see her to talk more about my feelings about Mum and AD.

Do you know if you will have much choice about which CH your mum may go to? Mum was funded by Social Services and due to her age they selected a brilliant CH. It was a *name removed* Home (I'm not sure if they have these in your area) and they had a special Dementia Wing. There were a number of people there of a similar age to Mum or just a bit older (Mum was 50, there was another lady the same age and about 5 or so people in their late 50's/early 60's)...that made me feel much better. I went to visit myself before Mum was moved there (and promplty burst into tears as soon as I was shown what would be Mum's room - it just hit me that it was really happening!). The whole place was like a 5* country hotel and we actually told Mum that she was going to stay in a hotel so that she didn't have to do anything, all of her meals would be prepared for her, her laundry done etc.

It was heartbreaking when Mum actually moved there...but Mum did settle in. The staff were brilliant and I was happy that Mum was looked after well. I know that you said that this isn't what your mum would want but my mum and my Auntie didn't have the knowledge that this horrible disease might affect them, I do have that knowledge and I want my husband and daughter to know that I don't want them to look after me at home, when the time comes, I want them to find the best CH that they can for me and vistit when/if they can. I know how Mum's illness affected me, how difficult I found it all, how guilty I felt about just about everything. I don't want my family to feel that way. Your Mum loves you and your Dad and I know that she would hate to see you both struggling with what is going on. She would know that in making such a hard decision you would only consider what was best for her.

Our mums can't tell us that now, but we have memories from before AD struck of how much they loved us.

I'm sending you HUGE HUGS at such a difficult time. xxxxxxxxx

[wjoanne918]

Thanks, sometimes just writing things helps because it lets them out. I tried to read some of the posts and responses to my dad earlier today but ended up in tears. I think your virtual hugs are the best right now because every time someone hugs me for real I fall apart, time heals I suppose and that's all we have now is time, thanks for listening guys. Jo xxx

[sussexsue]

I am 59 and yesterday when I was visiting mum (87) I joined in with some of the other residents in mum's Care Home playing a "name that tune and artist" quiz (sitting next to mum who was asleep and didnt actually know who I was). There are two residents there who I am sure are younger than me. However with young carers joining in as well we all had a really good time. Lots of music from the 50's, 60's, 70's musicals, etc.

With residents always well dressed and groomed, young bubbly staff, etc. age doesnt seem to matter. This particular CH places great emphasis on meeting the needs of the individual and I think that is why it works so well.

I can honestly say that if I was suddenly struck down with advanced dementia tomorrow I could happily live there.

[wjoanne918]

Just a little update really, it's been 5 weeks since mam went onto the assessment ward and things seem to be getting harder. I can't handle having to ask if mam has eaten, has she taken her medication, I know it seems silly but handing responsibility over is so hard. My dad isn't really coping, it doesn't help that mam is refusing to take her medication, refusing to eat or drink and is so agitated when we visit, just wandering around the ward, refusing to talk to us only shouting an threatening us. We're hopefully going to talk to the doctor tomorrow to find another way of getting medication into her. I really thought I'd be getting used to things by now but I'm not, I carry on every day trying to concentrate my children but I feel so guilty it's with me constantly. Sorry for the ramble but I find it easier to write how I'm feeling.
Thanx Jo xx

[paddyroo]

My mum was diagnosed 6 years ago at the age of 60, they said she probably had it from about 58years old...Its an awful disease, I work in social services and with adults with this kind of illness, but I still cant cope with seeing my mum like this.

Me and my dad care for mum, iM a mum of 2 school aged children and have a full time job yet the local council seem to think i can take on most of my mums care, they have offered us 14 hours a week care and some days at the day centre...REALLY....Someone with advanced alzheimers needs 24 hour nursing care, which they are quite willing to offer me if i put her in a nursing home, but shes just come out of respite which i needed to place her in vecause i was about to have a nervous breakdown....She was so unhappy and she knew she wasnt home.....She begged me when she was diagnosed not to put her in care, i made a promise to her and i will stick to it, but no one seems to want to help......Social services keep telling me things move slowly, the cogs take time to turn...Great, My cogs will seize and I will go mad, but they dont give 2 hoots...What a society we live in...No matter what the government spout out in parliamnet, they dont help, you have to beg for everything, its like being thrown scraps....I feel ashamed that I cant cope alone, but im no superwoman, I dont think the authorities will be happy until i end up in a phsyiatric ospital, my kids in care and my house repossessed..YThen I may get a little help....Please tell me what experiences you have had with the local aurthorities, coz im going crazy....Literally!!!!!!!!!

[wjoanne918]

My mum was diagnosed 6 years ago at the age of 60, they said she probably had it from about 58years old...Its an awful disease, I work in social services and with adults with this kind of illness, but I still cant cope with seeing my mum like this.

Me and my dad care for mum, iM a mum of 2 school aged children and have a full time job yet the local council seem to think i can take on most of my mums care, they have offered us 14 hours a week care and some days at the day centre...REALLY....Someone with advanced alzheimers needs 24 hour nursing care, which they are quite willing to offer me if i put her in a nursing home, but shes just come out of respite which i needed to place her in vecause i was about to have a nervous breakdown....She was so unhappy and she knew she wasnt home.....She begged me when she was diagnosed not to put her in care, i made a promise to her and i will stick to it, but no one seems to want to help......Social services keep telling me things move slowly, the cogs take time to turn...Great, My cogs will seize and I will go mad, but they dont give 2 hoots...What a society we live in...No matter what the government spout out in parliamnet, they dont help, you have to beg for everything, its like being thrown scraps....I feel ashamed that I cant cope alone, but im no superwoman, I dont think the authorities will be happy until i end up in a phsyiatric ospital, my kids in care and my house repossessed..YThen I may get a little help....Please tell me what experiences you have had with the local aurthorities, coz im going crazy....Literally!!!!!!!!!

Oh I really feel for you, we had the same problems, constant phone calls, begging for help, my dad was awarded almost an hour a week to help with bathing needs ha, great help when it used to take 2 hours to get her in the bath and another 2 to get her back out, all the time fighting with her I don't knw how my Dad coped. We hit a crisis unfortunately, where mum suddenly declined very quickly over a period of 2 weeks and I phoned my mums CPN in tears for fear that my dad was having a breakdown, that day the CPN came and admitted mum onto the assessment ward, that was 9 weeks ago, I still haven't been to work, I can't sleep or function, I feel guilty all the time for putting my mum in the last place on earth she would want to be but as everyone keeps telling me I did it or the right reasons, I too have school aged children plus a 2 year old, the only thing that helps is that man doesn't know where she is, she doesn't ask to come home if she did I don't know how I'd cope, good luck paddyroo xxxxx