New Member saying hello

[Dazmum]

Hi, i have just joined and thought I would explain my situation before I start posting problems and emotions... got lots of those! My mum abnd dad moved in with my husband, son and I six years ago because Dad was in poor health with kidney failure and some falling over episodes due to a problem with his spine. So, we thought it best to have them here with us so we could keep a close eye on them. I'm an only child and we have always been close. It was my husband's idea, bless him, a bit of me knows he wishes he had never suggested it, had he known what was in store for us all. To cut a long story shortish, Mum began to get very forgetful; at 79 to begin with we didn't think too much of it, but I noticed she had forgotten how to cook certain easy things. Alarm bells rang but I was so frightened of what we might hear I tried not to think about it. The crisis came when she asked one evening how she was going to get home, and the rest I am sure you are all familiar with. She was diagnosed with mild - moderate demetia almost two years ago and in spite of my not doing anything straight away, we seemed to have caught this relatively early. She has Aricept which has helped enormously in delaying things I think.

Dad was quite ill last year and needed 24hr care, which just wasn't practical for us, I work and couldn't leave mum to deal with him, even with carers coming in. We managed to find a really nice care home for him only 10 minutes away. I won't go into the trials of him adapting, just to say it's been an incredibly hard few months, and in spite of her problems, my little mum has dealt with it amazingly well. We've been able to discuss everything about his care and even have a bit of a laugh about it when we've felt like crying I think. I hope that I've done the very best I can for him, but at times he looks at me as though I'm Cruella de Ville, but I know that whenb we've gone he joins in with all the social events there and sings and even likes the food so a lot of it is for my benefit and designed to make me feel bad.

My mum is gently spiralling downwards really, some days she's fine but on her bad days, which we now recognise, she has an anxious look, wanders round the house, rummages through her handbag and says her mind is blank. I have had times when I have had to tell her that her parents are long gone, and that her home is with us now. Every time it happens my heart sinks through the floor, it feels like a huge shock all over again, but I have to be calm and talk her through it. I made her a big photo album with all kinds of pictures from the past and present in it and this seems to help. She basically has no short term memory at all now. We are lucky in that she seems happy most of the time with her reading and tv.

I'll probably post again another day about the issues I have with respite care and relatives as I can see you all experience this! I was thankful to read some of the emotions that people had put down, at last, other people who understand actually how terrible this is, and not 'fascinating' as someone once said to me . I don't say anything, but I certainly thought a lot!!!

 

[jenniferpa]

Hi and welcome to Talking Point.

Fascinating, eh? I doubt you'll find anyone here calling dementia that. Lots of other words, a few of which start with F but not that particular one.

People are odd, is about the kindest I can come up with with hindsight. I think I would have been hard pressed not to have slugged them but I think one is often so stunned by the inappropriateness of some of the comments one hears that one is left gaping like a stranded fish.

Anyway, welcome again and I hope you find the forum to be both useful and supportive.

 

[BeckyJan]

Hello and welcome:

Its sad you need to be here but you have painted a very clear picture of your situation. I think the sooner you start asking about respite the better, as it seems you may well need it.

I am glad the Aricept has helped; it certainly kept my husband fairly even for several years. Sadly it has been stopped now as it was no longer helping him.

Looking forward to seeing you around again soon. Best wishes

 

[Canadian Joanne]

Welcome to Talking Point, Dazmum. You'll see many different viewpoints, which should help you decide what is best for your situation.

I have had times when I have had to tell her that her parents are long gone, and that her home is with us now. Every time it happens my heart sinks through the floor, it feels like a huge shock all over again, but I have to be calm and talk her through it

I suggest not telling her that her parents are gone, if it distresses her so.

My mother would ask for her parents and I would say they were fine, same as always and when Mum pressed me, I would say we could visit them the next day or the day after. Because at the beginning when I told her they were dead, there would be floods of tears and "Why didn't anyone tell me?" etc. My goal was and is not to upset my mother. She's far down the Alzheimer's journey now so that's one thing I no longer worry about.

And I would do the same about "going home" - tell her the house is being painted, the plumbing is being fixed, any and every excuse and that you'll take her back when things are in proper order.

As for the 'fascinating' comment, it is unbelievable what people will say. I'll be charitable and say the person just blurted out something inappropriate.

 

[lin1]

Hello welcome from me too
Im sorry to hear about your mum and dad .

.Fascinating, eh? I doubt you'll find anyone here calling dementia that. Lots of other words, a few of which start with F but not that particular one.

I couldnt agree more

 

[cragmaid]

Fascinating.

Actually in my more pensive moments I do find the disease fascinating. Mind I have always been interested in the clinical side of illness, how diferring symptoms can be shown by people with the same overall diagnosis, why, for example, do some develop agression and others become compliant? I also find it fascinating that different LAs can interpret the same rules in such hugely different ways. So, while I totally agree that to use the word as a way of diverting converstion is completely abhorrent, I think there is a fascination about the clinical field of Dementia.

Sorry, I forgot to say hello and welcome to TP, You have given a super description of how this disease is affecting you and your family and I know that people here can give you friendship and support as they have for me. Keep in touch, Maureen.x.

 

[shauna]

Hi Dazmum

Welcome to TP you will get plenty of support here ,

Shauna

 

[maddy46]

dazmum

Hi, i have just joined and thought I would explain my situation before I start posting problems and emotions... got lots of those! My mum abnd dad moved in with my husband, son and I six years ago because Dad was in poor health with kidney failure and some falling over episodes due to a problem with his spine. So, we thought it best to have them here with us so we could keep a close eye on them. I'm an only child and we have always been close. It was my husband's idea, bless him, a bit of me knows he wishes he had never suggested it, had he known what was in store for us all. To cut a long story shortish, Mum began to get very forgetful; at 79 to begin with we didn't think too much of it, but I noticed she had forgotten how to cook certain easy things. Alarm bells rang but I was so frightened of what we might hear I tried not to think about it. The crisis came when she asked one evening how she was going to get home, and the rest I am sure you are all familiar with. She was diagnosed with mild - moderate demetia almost two years ago and in spite of my not doing anything straight away, we seemed to have caught this relatively early. She has Aricept which has helped enormously in delaying things I think.

Dad was quite ill last year and needed 24hr care, which just wasn't practical for us, I work and couldn't leave mum to deal with him, even with carers coming in. We managed to find a really nice care home for him only 10 minutes away. I won't go into the trials of him adapting, just to say it's been an incredibly hard few months, and in spite of her problems, my little mum has dealt with it amazingly well. We've been able to discuss everything about his care and even have a bit of a laugh about it when we've felt like crying I think. I hope that I've done the very best I can for him, but at times he looks at me as though I'm Cruella de Ville, but I know that whenb we've gone he joins in with all the social events there and sings and even likes the food so a lot of it is for my benefit and designed to make me feel bad.

My mum is gently spiralling downwards really, some days she's fine but on her bad days, which we now recognise, she has an anxious look, wanders round the house, rummages through her handbag and says her mind is blank. I have had times when I have had to tell her that her parents are long gone, and that her home is with us now. Every time it happens my heart sinks through the floor, it feels like a huge shock all over again, but I have to be calm and talk her through it. I made her a big photo album with all kinds of pictures from the past and present in it and this seems to help. She basically has no short term memory at all now. We are lucky in that she seems happy most of the time with her reading and tv.

I'll probably post again another day about the issues I have with respite care and relatives as I can see you all experience this! I was thankful to read some of the emotions that people had put down, at last, other people who understand actually how terrible this is, and not 'fascinating' as someone once said to me . I don't say anything, but I certainly thought a lot!!!

welcome I have recently joined here myself and everybody is so kind it realy is like an extended family with so much support it realy keeps you sain good luck Love and special Hugs Maddy

 

[William44]

Great advice

I suggest not telling her that her parents are gone, if it distresses her so.

My mother would ask for her parents and I would say they were fine, same as always and when Mum pressed me, I would say we could visit them the next day or the day after.

Great advice !! (x 1000 %)

I do this with my father, when he asks about somebody who has died. He accepts everything and seems pleased 'that everybody is all right'

 

[Dazmum]

Thank you so much everyone for your kind and wise words. I can see I am going to get lots of good advice here. I still feel relatively new to this, and am going to have to learn to say the right things at the right time so as not to cause mum any upset. I suppose I have always tried to be truthful, so it's not going to be so easy!

The person who made the 'fascinating' comment is rather a silly person that I work with who doesn't think before she speaks. Had I actually told her what I thought of the remark she would have been mortified I think. I remember a friend that I worked with a long time ago who used to describe what her poor old mum used to say to her, but she did it in a funny way to make us laugh, maybe her way of dealing with it. Had I known then what I know now I'd have seen through it.