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Welcome to Talking Point - introduce yourself here

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nae sporran

Volunteer Host
Oct 29, 2014
6,911
Bristol
Welcome to TP, TiddyBarrat. I don't know what to suggest, but understand your frustration at the lack of support you are getting. Many people on here have mentioned using hoists, and I think one of the previous tenants in our extra care housing had one. So, your mum should be ok once the OT has done an assessment. I don't know how long that will take though.
 

canary

Registered User
Feb 25, 2014
12,578
South coast
Hello @TiddyBarratt and welcome to Talking Point

Your mum does sound as though she is in late stages. Im afraid that the carers are right - they are not allowed to lift someone and it is going to require a hoist which the carers can use. The OT may well suggest a hospital bed and a special mattress to try and prevent the pressure sores. I would try and chase the OT up as it sounds like it is urgent that your mum gets the equipment.

My own personal opinion is that it is very hard work looking after someone who needs hoisting at home. If you are beginning to wonder about residential care it would probably be a good idea to go and look at some. She would probably need a dementia nursing home.
 

Belerra

New member
Sep 4, 2018
2
Belfast
Hello everyone, I have joined as I am supporting an Aunt with Alzheimers. The official diagnosis came just over two years ago and although difficult my Aunt and our family managed without many problems.

We are now finding things more difficult as we seem to be moving to a different stage with my Aunt resisting everything we are trying to put in place to make things safer and easier for her to stay in her own home. I hope to get some ideas and learn from others and maybe be able to offer support to others.
 

Cat27

Volunteer Moderator
Feb 27, 2015
11,343
Merseyside
Hello everyone, I have joined as I am supporting an Aunt with Alzheimers. The official diagnosis came just over two years ago and although difficult my Aunt and our family managed without many problems.

We are now finding things more difficult as we seem to be moving to a different stage with my Aunt resisting everything we are trying to put in place to make things safer and easier for her to stay in her own home. I hope to get some ideas and learn from others and maybe be able to offer support to others.
Welcome to TP@Belerra

I’m sure you’ll get lots of ideas & support here.
 

karaokePete

Registered User
Jul 23, 2017
5,503
N Ireland
Hello @Belerra, welcome to TP from me too. I hope you find the forum a friendly and supportive place.

After reading your post I was left wondering if your Aunt has had a care needs assessment. In case she hasn't here's a link to the AS Factsheet about the issue https://www.alzheimers.org.uk/sites...assessment_for_care_in_support_in_england.pdf

It may also be useful to check for any available support services in your Aunt's area and you can do a postcode check if you follow this link https://www.alzheimers.org.uk/find-support-near-you

Now that you have joined us I do hope you keep posting.
 

Hope999

New member
Sep 5, 2018
5
Hi, I've been looking for somewhere I could get support. I've been a career for my mum for so long now I've forgotten when it started. Since the death of my father it has got so much worse and I feel that I need to talk to keep my own sanity. Mum has 24/7 care from her children. I am finding that almost all of my evenings, we have the sundowner issues, mum wants to go home and no matter how hard I try there is no getting round it. Mum has always been a determined, but depressive lady sadly a glass half empty kind of girl. Dementia has completely emptied and cracked her glass, amplified the depression, removed her stop button and increased her tendencies to be nasty and to lash out at those who are trying to help her. "Going home" can last anywhere from one to seven hours, I have tried everything I can think of, distraction techniques, showing old photos, possessions, talking, not talking, routines, changing routines, removing myself from the room as often she gets quite abusive, nothing seems to help. I know that many of you will have seen this before , and I'm hoping that someone will suggest something that might help
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,323
Kent
Hello @Hope999 welcome.

My husband went through sundowning every night and there was nothing I could do to distract him.

Winter time was best , if anything could be best, when I could tell him it was too dark, too cold, too wet or too windy to go home and let's leave it till tomorrow. Believe it or not I was glad when winter came.

I have read of people taking their people with dementia for a car ride and when they arrive home , home is accepted.

Its late for many replies but I'm sure you'll get lots more tomorrow.
 

Hope999

New member
Sep 5, 2018
5
Hello @Hope999 welcome.

My husband went through sundowning every night and there was nothing I could do to distract him.

Winter time was best , if anything could be best, when I could tell him it was too dark, too cold, too wet or too windy to go home and let's leave it till tomorrow. Believe it or not I was glad when winter came.

I have read of people taking their people with dementia for a car ride and when they arrive home , home is accepted.

Its late for many replies but I'm sure you'll get lots more tomorrow.
 

Hope999

New member
Sep 5, 2018
5
Hello @Grannie G
Thank you for your reply, we used to walk with mum but the walks got longer each time. One time we couldn't get her to come back and it became dangerous. I had thought about taking her out in the car but I'm somewhat worried that a similar thing would happen and I'd not get her out of the car, as who she really wants to see is her mum who died before I was born, but at this point I'm willing to give anything a try.
 

TiddyBarratt

New member
Sep 3, 2018
7
Hi I have just joined this forum to gain and share my support with others. My mother was diagnosed with Alzheimer's' end of last year. i am still trying to work out which stage but would assume late to end? Her mobility has declined since May when she turned 90, partly due to lack of fluids/food, large weight loss. In the last 2 weeks she has become almost bed bound due to her two carers being unable to move or assist her down to regulations which we find annoying as well as having to respect their own safety... reluctantly I guess....sorry for being horrid....but if assistance from getting up from an armchair cannot be done by 2 carers what is the point!!!
Does anyone feel my pain even though I understand manual handling etc etc there is so much red tape!! Sorry just fallen off my trail of thought through all the anger and frustration.
Now waiting for another OT assessment to assess if equipment can help her....or help the carers maybe.
My brother is getting her out of bed when she allows due to her bed sores and sores on her heels which are being taken care of by district nurse...... she is becoming a little aggressive which has happened before and grimacing in pain not letting the carers move her....GP can only suggest giving her paracetamol before moving her.....I don't know if she is in pain or her brain is sending signals......if we went by the carers ideas we would be calling an ambulance each day..... not knowing which way to turn anyone going through the same.....should I be thinking about residential care....or can anyone suggest proper nursing care.....really she is receiving bed wash, pad change and little else......she doesn't want to eat or drink without reluctance....all ideas welcome. Sorry for going on...:(
Hi I have just joined this forum to gain and share my support with others. My mother was diagnosed with Alzheimer's' end of last year. i am still trying to work out which stage but would assume late to end? Her mobility has declined since May when she turned 90, partly due to lack of fluids/food, large weight loss. In the last 2 weeks she has become almost bed bound due to her two carers being unable to move or assist her down to regulations which we find annoying as well as having to respect their own safety... reluctantly I guess....sorry for being horrid....but if assistance from getting up from an armchair cannot be done by 2 carers what is the point!!!
Does anyone feel my pain even though I understand manual handling etc etc there is so much red tape!! Sorry just fallen off my trail of thought through all the anger and frustration.
Now waiting for another OT assessment to assess if equipment can help her....or help the carers maybe.
My brother is getting her out of bed when she allows due to her bed sores and sores on her heels which are being taken care of by district nurse...... she is becoming a little aggressive which has happened before and grimacing in pain not letting the carers move her....GP can only suggest giving her paracetamol before moving her.....I don't know if she is in pain or her brain is sending signals......if we went by the carers ideas we would be calling an ambulance each day..... not knowing which way to turn anyone going through the same.....should I be thinking about residential care....or can anyone suggest proper nursing care.....really she is receiving bed wash, pad change and little else......she doesn't want to eat or drink without reluctance....all ideas welcome. Sorry for going on...:(
 

TiddyBarratt

New member
Sep 3, 2018
7
Thank you all for your kind support its taken me a few days to work out how to reply..... sorry. i have requested a re-assessment through social services as well as the OT referral so will see...
 

Scared1

Registered User
Sep 8, 2018
14
Hi all, my partner was diagnosed just under 2 years ago with Alzheimer's.

The signs however were apparent to me for at least a year beforehand. Things like not being able to find the right words during speech, having to explain things a couple of times or more, planking his wallet and waking up in the middle of the night for us to have to hunt the house for it.

I have joined as I am coming to the stage of no return. Things have been worsening steadily over the past year in terms of behaviour, paranoia etc. Mainly at night. I hope I can pick up tips here or just have a space in which to let off steam.
Thanks
 

Scared1

Registered User
Sep 8, 2018
14
Hi all, my partner was diagnosed just under 2 years ago with Alzheimer's.

The signs however were apparent to me for at least a year beforehand. Things like not being able to find the right words during speech, having to explain things a couple of times or more, planking his wallet and waking up in the middle of the night for us to have to hunt the house for it.

I have joined as I am coming to the stage of no return. Things have been worsening steadily over the past year in terms of behaviour, paranoia etc. Mainly at night. I hope I can pick up tips here or just have a space in which to let off steam.
Thanks
Yes i understand. I get similar from my husband thinking someone like the window cleaner is going to take things.the mood swings are difficult.can chane within a minute..his started two years ago very slowly after athe death of our best friend.. word finding is really difficult. Social disconnection is more difficult and names .. i just say oh look theres david over there.. then he can say hi david..thats a fix for that problem..but as yet i havent applied for benefits but must try and make a start.
 

Scared1

Registered User
Sep 8, 2018
14
Welcome to Talking Point, glasshalfempty. You will certainly get plenty of good advice here, and a safe place to let off steam. We are all on the same journey, and understand. I hope you will post further when you are ready.
All the best to you.
Thank you
 

Scared1

Registered User
Sep 8, 2018
14
Hi
Just to introduce myself and hope I can get and give support to other members in the future. l am slowly going out of my mind trying to deal with my father who has a diagnosis of mixed dementia. My mother died suddenly in July in difficult circumstances (not dementia) and my father finally got his dementia diagnosis 6 days later, having previously been told he only had mild memory problems. We all knew they were far from mild!! But he presented well in a consultation so was told to ‘come back in a year’. My poor mother had 7 months of hell before being taken ill. The trauma of trying to sort out a funeral and deal with my dad’s confusion has taken its toll and I actually can’t bear him near me at the moment - he is so wrapped up in himself and his needs that my feelings have been completely steamrollered. I know he’s ill but I just don’t think I’ve got the strength to carry on. Please tell me how to survive this nightmare.
You need to get some help in to to give you a break..selfishness and lack of empathy is part of this dementia with some people..they cant sympathise because they font know how to .also selfishness is how the elderly act its like going back to childhood..its very hard but dont tske it to heart..hope this helps
 

glasshalfempty

New member
Aug 20, 2018
6
Yes i understand. I get similar from my husband thinking someone like the window cleaner is going to take things.the mood swings are difficult.can chane within a minute..his started two years ago very slowly after athe death of our best friend.. word finding is really difficult. Social disconnection is more difficult and names .. i just say oh look theres david over there.. then he can say hi david..thats a fix for that problem..but as yet i havent applied for benefits but must try and make a start.
Yes i understand. I get similar from my husband thinking someone like the window cleaner is going to take things.the mood swings are difficult.can chane within a minute..his started two years ago very slowly after athe death of our best friend.. word finding is really difficult. Social disconnection is more difficult and names .. i just say oh look theres david over there.. then he can say hi david..thats a fix for that problem..but as yet i havent applied for benefits but must try and make a start.
Have you made sure you have POA in place. I would see about benefits as soon as you can especially if you have POA in place already. I have noticed a huge difference in change just over the last two years between mood swings, late night confusion, very disruptive sleep patterns and all the rest. Xx
 

DonnaTr

New member
Sep 9, 2018
4
Hello my name is Donna,

I’ve decided to join this forum because my mum has been diagnosed as having vascular dementia. She is currently being held in a care facility. Her behaviour has got more agressive over the last few weeks which makes me think she’s had another mini stroke.
 
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