Update on my Mum - she now has Vascular Dementia & Alzheimers

[lighthouse68]

Hi All

I haven't posted anything for a while now, time just seems to disappear. Just thought I would give an update here.

When I first postes, my mum had MCI. As things begain to deteriorate, Dad took her back to the Doctor who referred her for a brain scan, then as that was inconclusive she had ECG tests. This showed a clearer picture of part of the brain being starved of blood and the Vascular Dementia and Alzheimers was diagnosed.

Sometimes, well most of the time, I feel totally ineffective and useless. I work full time, and my Dad is Mum's carer. She is happy and laughs, but says very little and when she does, it's a reapeat of what she's heard. I take on the cooking, cleaning washing etc as well as trying to keep Mum in check, keep Dad from getting stressed and try to live my life too ( that's not happening).

2 weeks ago she went out and dissapeared for 4 hours. It was dark, cold and raining. We had to involve the police after searches of our own drew a blank. We eventually got her home safely, she has walked 6 miles to a supermarket and waited. Thankfully the staff took care of her, and managed to weedle our telephone number and name out of her. It's so very worrying, and I know it will only get harder.

I'm sorry to ramble on. Sometimes I feel I have no one to talk to or get things of my chest to.

 

[pamann]

Hello lighthouse, thank you for your update. It is such a worry when your loved one goes off, it happened many times with my husband the police a quite used to finding people with Alzheimers. Maybe a tracker would be a good idea, she may do it again.

 

[Georgina63]

Hi Lighthouse68. My mum used to wander and we contacted the local supermarkets and places she visited with Dad and made them aware that both Mum and Dad have dementia, leaving info and contact details. We also filled out a Herbert Protocol with the police, which is a useful thing to do if you haven't done already. I also put Mum's name and contact info on cards and put in all her coat and jacket pockets. We tried a medi-bracelet but she wouldn't wear it, and also a 'memo minder' by the door to remind her not to go out alone, but that was too confusing for Mum and Dad. Mum only ever wandered as far as neighbours, but it was always such a worry, I'm really sorry you are going through this. Gx

 

[lighthouse68]

Hi Lighthouse68. My mum used to wander and we contacted the local supermarkets and places she visited with Dad and made them aware that both Mum and Dad have dementia, leaving info and contact details. We also filled out a Herbert Protocol with the police, which is a useful thing to do if you haven't done already. I also put Mum's name and contact info on cards and put in all her coat and jacket pockets. We tried a medi-bracelet but she wouldn't wear it, and also a 'memo minder' by the door to remind her not to go out alone, but that was too confusing for Mum and Dad. Mum only ever wandered as far as neighbours, but it was always such a worry, I'm really sorry you are going through this. Gx

Thank you for your reply. We haven't heard of Herbert Protocol but will certainly look into that. I'm going to make some contact cards to slip into Mums pockets, I just hope she doesn't bin them. We have memo reminders all over the house for her, she takes not a bit of notice of them or anything we say. I do wonder if she just chooses not to listen. We re-iterate that she shouldn't go out alone, she is okay to wander in the garden, but not out of the gate. Mostly she's happy picking up leaves and taking them to the bin, one by one..... Whatever Mum is doing, we have to always have an eye on her. At the moment she is constantly moving books from room to room. It makes you tired and never able to totally relax.

 

[Dayperson]

Hi lighthouse68, I feel your pain and your experience must have been very frightening. Mum has dementia and I feel like sometimes I have to look after both Mum and dad (I do washing, cleaning etc) but my dad does help a lot.

Have you considered getting help to take some of the pressure off if you haven't done already? I am sure you may be entitled to some carers or help?

 

[Georgina63]

Thank you for your reply. We haven't heard of Herbert Protocol but will certainly look into that. I'm going to make some contact cards to slip into Mums pockets, I just hope she doesn't bin them. We have memo reminders all over the house for her, she takes not a bit of notice of them or anything we say. I do wonder if she just chooses not to listen. We re-iterate that she shouldn't go out alone, she is okay to wander in the garden, but not out of the gate. Mostly she's happy picking up leaves and taking them to the bin, one by one..... Whatever Mum is doing, we have to always have an eye on her. At the moment she is constantly moving books from room to room. It makes you tired and never able to totally relax.

Herbert Protocol definitely worth doing, in the hope that it's never needed. An hour of filling in a form with description details etc....time well spent before the event should you ever need to relay all of that information. I did it with the help of a Community Support Officer from the local police station who visited my house to help me complete. Like you, we would tell Mum not to go on her own, but that was easily forgotten, and Dad wasn't aware enough to always lock the door. We did investigate all sorts of tracker and ID devices but mum wouldn't have worn them. Mum also moved things around constantly - a source of bemusement and frustration for Dad. It is very wearing isn't it? I hope you are able to get plenty of help. If you haven't already, I found the local Alzheimers society very helpful for getting the ball rolling and pointing me in the right direction. All the best. Gx

 

[lighthouse68]

Hi lighthouse68, I feel your pain and your experience must have been very frightening. Mum has dementia and I feel like sometimes I have to look after both Mum and dad (I do washing, cleaning etc) but my dad does help a lot.

Have you considered getting help to take some of the pressure off if you haven't done already? I am sure you may be entitled to some carers or help?

Hi Dayperson, Thank you for your reply - you also sound in a similar position as me. It is frightening, and sometimes I feel I'm looking after both Mum and Dad. Dad helps lots, but I know it takes it's toll on him.

Yesterday Mum went for a few hours to a home to give Dad some rest bite. It enabled him to go for a swim without having to worry about Mum on her own. She seemed to enjoy it, had her lunch...and jam roly-poly and also won a tin of beans on the raffle. She is going again this morning, so we'll see if she was just as happy...or if it was a one off.

Here's hoping for peace and harmony all round!!

 

[Trini]

Hi Lighthouse68
Like you I have not posted for a while. Your experience sounds very much like mine except MIL not mother. She was diagnosed VD/ Alzheimers a year ago and her deterioration has been dramatic since then. From living independently albeit forgetful she is now totally dependent in all ways living with a 24 hour live in carer. She has lost mobility and now has a wheelchair to move her around the house. She has to be spoon fed but still has a good appetite. In fact since the carer moved in she has put weight on! She is doubly incontinent. Miraculously though she still recognises us and knows who we are. She speaks very little these days. So we have had a relatively stable few months but that looks set to change as the carer is now struggling to cope with her - lifting and moving her around. The family seem to be finally accepting that she will need to go into a home. This is the same lady who 8 months go wondered off and walked for about 6 miles back to her childhood home! It is scary how quickly this all happens. I wonder if she will make it to Christmas. Thinking of you all. Such a horrid disease.

 

[lighthouse68]

Hi Lighthouse68
Like you I have not posted for a while. Your experience sounds very much like mine except MIL not mother. She was diagnosed VD/ Alzheimers a year ago and her deterioration has been dramatic since then. From living independently albeit forgetful she is now totally dependent in all ways living with a 24 hour live in carer. She has lost mobility and now has a wheelchair to move her around the house. She has to be spoon fed but still has a good appetite. In fact since the carer moved in she has put weight on! She is doubly incontinent. Miraculously though she still recognises us and knows who we are. She speaks very little these days. So we have had a relatively stable few months but that looks set to change as the carer is now struggling to cope with her - lifting and moving her around. The family seem to be finally accepting that she will need to go into a home. This is the same lady who 8 months go wondered off and walked for about 6 miles back to her childhood home! It is scary how quickly this all happens. I wonder if she will make it to Christmas. Thinking of you all. Such a horrid disease.

Hi Trini

I feel for you and your family, this is such a cruel and horrid disease. It's nice to hear that your MIL still recognises and knows who you are. Like my mum who says very little, and when she does, she repeats what we have just said to her. No one wants their loved ones to have to go into a home. My mum has had 2 mornings at a care centre for the first time this week. It's given dad a little 'him' time which he desperately needed. It is frightening how swiftly things can change, and know that the situation will gradually get worse. I hope your MIL will be in a safe and caring home - that too is such a worry when you hear horror stories. Lets hope she makes Christmas and sees a little happiness.. Thinking of you too.