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Post by sooz on Apr 21, 2016 12:14:56 GMT
After conspiring with the GP about my mother, she was recently assessed by a nurse from the memory clinic. Mum said it went well. Nurse phoned me yesterday to get my take on the situation and I asked what she thought was going on......most likely vascular dementia!
Ok, so I knew something was going on but was still shocked to hear it.
spent a good couple of hours sobbing then pulled myself together. Took her out for breakfast this morning and felt so different towards her. We've had many ups and downs, mother and I, she has never been easy to say the least, but now I can at least understand her recent behaviour, and that helps.
i know some of you have been through it with parents.
at the moment it's mostly just problems retaining information, poor memory, stumbling over words etc... She doesn't know, it's not been confirmed as she's awaiting a brain scan. Not sure how that subject can be broached, she'd freak out I know!
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Post by serrakunda on Apr 21, 2016 14:49:07 GMT
Do you not think she might already have an inkling ? Maybe wait until the scan, go with her and be with her when the doctor tells her the outcome, and then you are for support and ask the questions she might not be able to at that point
Sending hugs.
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Post by imp on Apr 21, 2016 17:20:46 GMT
So sorry to hear this sooz. My father had Alzheimer's, and my mother Vascular dementia, so am more than happy for you to message me xxxxxxx
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Post by sooz on Apr 21, 2016 17:44:48 GMT
I'm doing some reading up, but any first hand information I'd be grateful for xx
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Post by moo on Apr 21, 2016 18:19:32 GMT
Hugs sooz xxxxx
Xx moo xx
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Post by lilyofthevalley on Apr 21, 2016 19:11:04 GMT
My mother was diagnosed with dementia a few months ago. She then had a stroke and has vascular dementia too as a result of the stroke. She remains in the stroke unit in the hospital and has one to one nursing. She will be going to a nursing home near my sister. Her house will be sold. It is so sad to see. When I visited her she asked me if I would be taking her out at half term. She went to boarding school. She is now 93.
Lily x
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Post by jmk on Apr 21, 2016 19:34:56 GMT
So sorry to hear this Sooz, hugs x
My mum has Alzheimers. She's nearly 90 and has had two older brothers who both had it for 5-6 years before they passed away aged around 92/93, so she has lived through it with both of them, watched their decline and was well aware it could happen to her and now it has. She is still really good some days, so much so you'd hardly notice it, but then other days she is very confused and repeats herself a lot. She is still firecely independent and is refusing to go into the lovely private care home her brothers went to, having persuaded them to go there. I think she sees it as a downward spiral if she goes in there as neither of them ever made it back home once admitted. She is determined to remain at home in her own house and my brother has arranged for a lady to visit every day at 9.30am to check up on her. The lady stays while mum showers and gets herself dressed just in case she has a fall and once mum is downstairs, they have a cup, of tea and a chat before the lady heads off. Mum has a companion she sees everyday. His wife died of Alzheimers a few years ago and despite being 92, he is fit as a fiddle with all his wits about him. He keeps her mentally alert and they take turns to cook for each other, go on outings together to the seaside etc as he still drives. He is wonderful and really cares for her as he has no family around him and he needs the company as much as she does.
She is content, but on her good days, she does realise she is losing it and it is upsetting for her. Her biggest wish is to pass away in her sleep. She says she is not afraid of death, but is afraid of dying. She sorted out all her affairs a few years ago, did her will while she had her wits about her as she knew what was coming. She enjoys herself and makes the most of every day, wants for nothing, sees my brother for lunch every wednedsay and joins him and his family every sunday for dinner. She is still our lovely mum, but you can see how vulnerable she is and how she can sometimes become upset when she can't remember things.
It is role reversal when your mum becomes more like a child and you become the carer and that takes some getting used to. I just wish I lived closer and could, visit her more, but sadly due to my own girls needs, I am unable to do this very often and have just this week written a letter to SW asking about what the situation would be regarding taking EDD to Ireland should I get a phonecall. I wanted to sort this out in advance just in case, as I do not want to be dealing with it, should the worst happen. EDD may very well refuse to go, may say she is not my real grandma, but I needed to ask just in case, and hope she will remember how good my mum was to her over the years.
I think we all want our parents to live forever and it is a big shock to see them become more frail and needy as they age, but at nearly 90, I feel privileged to have had her around for so long as my Dad died when he was just 65 and I always felt cheated to have lost him so early.
Sorry, I'm probably not helping you at all am I? Just remember to say all the things you want to say to her (or write it in a letter) so you have no regrets and then just carry on enjoying her for as long as you can.
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Post by gilreth on Apr 21, 2016 21:57:45 GMT
Both my grandmothers have/had dementia. Grandma was vascular dementia - and Mum (was her MIL) was her carer for 6 years until it got so bad that she had to move into a home. We lost her just weeks before DH & I were approved as adopters - but at least she did meet her first great-grandson and towards the end actually asked my sister about him. DH always says it is tragic he never really got to meet her as I talk about her. Granny was diagnosed about 12 months ago (she turned 90 last Nov) and is thus far doing alright although short-term memory is an issue. The one thing Mum has always said is she is grateful they sorted out power of attorney while both of my grandmothers were still in the early stages.
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Post by lilyofthevalley on Apr 21, 2016 22:19:03 GMT
I have in mind doing a post about making a will, power of attorney, thinking about funerals etc as am in process of doing this myself at present. However am not quite ready to do so. My Mum's situation has also given me much to think about. I thought I might put it under the'discussions' category.
Lily
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Dementia
Apr 21, 2016 22:56:04 GMT
via mobile
Post by milly on Apr 21, 2016 22:56:04 GMT
My mother is in her 80s. She had a stroke about 9 years ago and has since declined - vascular dementia suspected though not sure it's actually been officially diagnosed. My father is fit as a fiddle and looks after her. She gets confused and in the past year has begun to make up "memories" which is upsetting. She knows she's losing it and also sadly losing her mobility via a painful knee which means she can't walk far - always enjoyed a good walk etc.
In many ways I feel more sorry for my dad. My mum's never been that easy to live with and dementia has exacerbated that. He's not a natural carer (never a hands-on dad) and his life style has been curtailed in many ways because of mum's illness. Sounds selfish but I know the whole situation depresses him. It's hard to help as he's fiercely independent himself and we don't live nearby. Luckily my brother has much less to tie him down than my sister and I so he can give some support when needed.
It's a horrible illness. My younger dd just doesn't get on with grandma (older dd does, mum adores her) and it's sad to realise she never knew my mother as she used to be. But mum is still herself in a lot of ways so I'm grateful for that. Not how I imagined dementia to be - it's been a very slow decline and my father talked about it long before any of us really noticed anything much.
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Post by sooz on Apr 22, 2016 8:16:42 GMT
Yes' mum is still active, also with a bad knee, so stairs are tricky, and she hasn't really got any worse for quite a while, which apparently fits in with a stepping kind of decline rather than steadily gradual.
She gave me power of attorney several years ago anyway.....just in case!
Xxx
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Post by sockthing on Apr 22, 2016 8:43:05 GMT
Sorry to hear this Sooz, such a sad disease. Hope you are feeling ok.
Hugs to others who have experienced this too.
(((()))))
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Post by caledonia on Apr 22, 2016 12:43:08 GMT
we are going through this with my Mum at the moment and its so worrying. Although she is forgetting words she is also very unstable and falls over and falls out of bed so it may be Parkinsons rather than dementia. She is going to get a brain scan to see what is happening.
The wondering and worrying about it is awful. We have just moved 500 miles away from her and my Dad and the distance is going to make it tough.
thoughts and prayers are with you.
Cale x
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Post by rosie on Apr 22, 2016 17:43:06 GMT
Sorry to hear this, it is very upsetting to see the change in people who have seemed so strong and supportive all their lives. The role reversal is very strange. My mother is nearly 90 and has vascular dementia. She developed it after a bad bout of pneumonia about 6 years ago. We persuaded her to go into sheltered housing; so she still has her own flat but there are pull alarms in the flat and a manager who lives on site and who contacts them daily, sorts out any problems and keeps an eye on things. The flat is also geared up to her physical needs. This has worked well for some years, though she has recently got a bit worse and we are contemplating a care home. One thing I will say is that for a long time her mental state didn't change very much; with vascular dementia it tends to deteriorate in steps; so you can go for a long while without change. She would sometimes become very frustrated that she couldn't remember things but still had quite a good quality of life and was quite happy. You will probably find your Mother will not change drastically for a while.I think the important thing with dementia is to try and ensure that the person has plenty of stimulation and contact with people. Mum has always enjoyed being taken out or coming to our house for a meal, and so has a good time in the present. She does not remember what she has done even later in the day, but things have been positive in the present. It is for this reason now that we think Mum might be better in a good care home, as she is increasingly doing less at home and if we cannot get to see her, only sees the carers every day. She doesn't always want to go out to her dining club and doesn't even always put the television on. She needs coaxing to do things and then enjoys them. We have found a home really geared up to people with her needs with lots of lovely things going on which we feel would really suit Mum; we just have to persuade her it might be a good idea.
There are lots of organisations around that can help out too; so worth looking at what is available locally. Carer's trust can provide carers to take people with dementia to activities or to sit with them; as it is difficult sometimes if working to do these things as often as you would like. We have used this service to provide someone to take Mum to a dining club a few times a week. Even with the deterioration Mum still has 'good' days where she seems more like her old self; so though it is upsetting there are still positives.
DD has found it hard to accept the recent changes in Grandma; but she did at least have a few years of the real grandma. You probably don't need to say much to Snooz until it becomes more noticeable.
With the brain scan we found that the doctor giving the results after, handled the discussion well; so hopefully you will get similar. I would definitely recommend going with her, so you hear the full picture. I don't think Mum fully understood the implications of what he was saying to be honest, so we had less of a problem. We played down the 'dementia' word and talked about her memory more and things that might help her; and she seemed to cope with that.
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Post by monkey on Apr 24, 2016 19:14:10 GMT
There's a really good short course called "Dementia Friends" which we did at work about supporting people with Dementia. It's a couple of hours introduction run by the Alzheimer's Society. We did it at work and it was a real eye opener.
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Post by larsti on Apr 25, 2016 7:07:40 GMT
Very sorry to read this Sooz
My MIL had vascular dementia. She was already in sheltered housing so that was helpful. And she had one friend in particular who was very helpful. We were about 45 mins away and SIL further away.
Are you quite local to your Mum? Sorry if you have said already.
(((((Sooz))))))
PS One book I found helpful was this one
www.amazon.com/Learning-Speak-Alzheimers-Groundbreaking-Approach/dp/0618485171
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Post by sooz on Apr 25, 2016 16:40:24 GMT
Thank you. Yes mum is 2 minute walk away xx
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Post by ham on Apr 25, 2016 17:48:00 GMT
Sorry. To hear . On a course we briefly touched on dementia and of the suggestions was to make a care plan of likes and dislikes not just food but type of clothes , bedding anything that is important to your mum.. Also to bare in mind things that might have been important from their younger days. Eg did she have blankets rather then duvets .one example we were given was a lady kept wearing in the sink then it was realised she thought the sink was a toilet as the light over the sink with a pull switch reminded her off the toilet with overhead cistern and the pull flush. A fake cistern was built over toilet and she started to use toilet.
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Post by larsti on Apr 26, 2016 21:51:19 GMT
This might be genuinely helpful.... www.playlistforlife.org.uk/#2839 I read Sally Magnusson's book about her mother's dementia last year. DH is reading it now. Its an excellent book really the story of her mother's life as interspersed with the story of how the family responded to the situation. Its a story about love really. They noticed that music was the one thing that their mother responded to and could sing whole songs from her youth. It reminded me of my MIL the last time I saw her she was singing 'Count Your blessings, count them one by one...' I think it was a song she learned at Sunday School. Hugs
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Post by sooz on Jun 20, 2016 22:02:02 GMT
Got the results today. Vascular dementia and Alzheimer's....
Mum took the news surprisingly well. I think she was glad to have an explaination. I expect some fallout at some point though.
She stated she didn't want any outside help as she didn't need it! I may have to gently overrule that one though as her idea of not needing help doesn't include me lol.
Conversations between an autistic snooz and a mum with dementia are interesting lol
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Post by serrakunda on Jun 21, 2016 6:29:21 GMT
(((((Sooz))))
Yes I can imagine the conversations Simba would have had with my nan
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Post by gilreth on Jun 21, 2016 9:15:55 GMT
(((Sooz)))
I can imagine those conversations - I have to remind myself lots when I am talking to my Granny about the dementia as my autistic tendencies can be a pain. Sqk just adores her and accepts her as he has never really known her any differently. It took a while to get my other grandmother to accept help - and even then it was from her neighbour until she moved in with my parents. It was only towards the end when she wa sin the home that she really accepted it. Granny on the other hand loves going to her daycare placement and recognises it helps everyone so has been proactive from the word go.
Do make sure you have lasting power of attorney and her will sorted while she is still with it enough. It was the saving grace with Grandma and Mum has made sure it is sorted with Granny early on.
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Post by moo on Jun 21, 2016 10:45:17 GMT
Ohhh sooz gentle hugs coming your way xxxxxxx
Try & be practical.... as others have said sadly this could be slow to worsen or shockingly fast.....
Sort the power of attorney, & help for her & you..... This is gonna be so tuff xxxx.... I know you know, it is the one thing my Mum & I dread for herxxxx many many hugs xxxxxx
Xx moo xx
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