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Welcome to Talking Point - introduce yourself here

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Jezzer

Registered User
Jun 12, 2016
984
Lincoln, UK
Hello. This is my first attempt to join in. Like you I’m wanting to share my experience and sorry if I’m not able to offer any advice right now. My sister and I have been looking after our 97 year old Mum in her own home until 3 weeks ago, taking it in turns to live back in our childhood home which has been a very emotional experience in itself. Mum’s VD was actually confirmed 3 months ago. She couldn’t be left alone as she panicked so it’s been 24/7 care. We tried our best to make her feel safe and happy but her periods of anxiety and distress continued no matter what we did. Medication hasn’t really helped and we were advised by our social worker to take up the offer of an assessment bed in a Respite home for 3 weeks. Reluctantly we did and the assessment recommendation has been confirmed that she needs full time residential care. Today we have to move her into a care home, after an exhausting search. We feel beyond sad because for some of the time she is still recognisably our alert, switched-on Mum struggling to make sense of what’s happening to her. She values her independence and ‘going into a home’ has been her biggest dread so we’re full of guilt and worry.
What do we say to her today when looks at us so hopefully and asks if she’s going home? She used to ask us this when she actually was at home but couldn’t recognise that she was. When she asks us for ‘the truth’ can she handle it?
Sorry if I’m not offering anything useful to you right now but just needed to explain what we’re facing ourselves today. Woke up at 5am worrying about it.
please accept my apologies as I see mum has already had a period of respite. Perhaps you could say this is being extended as it is felt she needs further evaluation and rest? Im so sorry as I feel Ive been more hindrance than help.
 

Chesterton

New member
Jul 24, 2018
3
Good morning and welcome. I wish it were under better circumstances for you. This is so tough for you and your sister but the main thing to keep in mind is that you are doing the right thing for your dear mum. You clearly love her dearly and have done remarkably well in your loving care. However the time has come where residential care becomes necessary as it did for my precious mum. I do appreciate your wish to be truthful with your mum but might I suggest, if she becomes distressed, that you tell her she is having a period of respite? I know this isn't strictly true but it could help settle her fears. To my amazement my mum settled into her NH immediately! She DID actually go in for respite but when it was agreed she needed permanent care, she became upset in the meeting because she thought she was being moved and didn't want to leave!! Since then she has happily considered the NH as "home". I appreciate how distressed you feel but if you can, try and remain calm and positive with mum today and continue to reassure her. Forgive me if I'm advising. what you already know. My thoughts are with you all. Please keep us up to date. TP is a wonderful forum and you will receive nothing but kindness, compassion, understanding and, if needed, good advice and support. I wish you well today. With love and understanding. J
please accept my apologies as I see mum has already had a period of respite. Perhaps you could say this is being extended as it is felt she needs further evaluation and rest? Im so sorry as I feel Ive been more hindrance than help.
please accept my apologies as I see mum has already had a period of respite. Perhaps you could say this is being extended as it is felt she needs further evaluation and rest? Im so sorry as I feel Ive been more hindrance than help.
please accept my apologies as I see mum has already had a period of respite. Perhaps you could say this is being extended as it is felt she needs further evaluation and rest? Im so sorry as I feel Ive been more hindrance than help.
please accept my apologies as I see mum has already had a period of respite. Perhaps you could say this is being extended as it is felt she needs further evaluation and rest? Im so sorry as I feel Ive been more hindrance than help.
 

Tricia/George

New member
Jul 29, 2018
2
Hi. Just joined to be able to share experiences and learn from others Re dealing with a relative with dementia. My mother in law was diagnosed with vas dementia and Alzheimer’s a few years ago. She doesn’t remember she has it and just says she is forgetful since having s bang to the head. She lives alone aged 84 and is very active walking lots with her dog and looks after herself and dog well. However she is getting increased episodes of paranoia and at present is agitated and obsessed that her granddaughter has been travelling to Birmingham from Cardiff and going in and out of her house stealing money and possessions. When her son tries to tell her the granddaughter doesn’t even know where she lives she won’t acceot it. How do others deal with such paranoia? Any advice gratefully received
 

Tricia/George

New member
Jul 29, 2018
2
Hi. Just joined to be able to share experiences and learn from others Re dealing with a relative with dementia. My mother in law was diagnosed with vas dementia and Alzheimer’s a few years ago. She doesn’t remember she has it and just says she is forgetful since having s bang to the head. She lives alone aged 84 and is very active walking lots with her dog and looks after herself and dog well. However she is getting increased episodes of paranoia and at present is agitated and obsessed that her granddaughter has been travelling to Birmingham from Cardiff and going in and out of her house stealing money and possessions. When her son tries to tell her the granddaughter doesn’t even know where she lives she won’t accept it. How do others deal with such paranoia? Any advice gratefully received
 

vldt56

Registered User
Jul 29, 2018
12
I've just joined, very late in the day. We live with my partner's 93yr old father who's had Alzheimer's for probably 4-5 yrs. He's still continent, and can walk with the aid of a stick. He's confused much of the time, can't really be left for very long because he gets very anxious, and I've become the primary carer. It's become increasingly difficult, and I've reached the end of my tether. We are taking him to a care home tomorrow for respite care, which if he settles, will become permanent because I've got an operation very soon, need recovery time, and we need a holiday. He seemed accepting of going into care, but tonight he's very distressed, very angry, and I'm realising that perhaps there are better ways of going about things. What do we do if he refuses to get out of the car???
 

karaokePete

Registered User
Jul 23, 2017
5,571
N Ireland
Hi. Just joined to be able to share experiences and learn from others Re dealing with a relative with dementia. My mother in law was diagnosed with vas dementia and Alzheimer’s a few years ago. She doesn’t remember she has it and just says she is forgetful since having s bang to the head. She lives alone aged 84 and is very active walking lots with her dog and looks after herself and dog well. However she is getting increased episodes of paranoia and at present is agitated and obsessed that her granddaughter has been travelling to Birmingham from Cardiff and going in and out of her house stealing money and possessions. When her son tries to tell her the granddaughter doesn’t even know where she lives she won’t accept it. How do others deal with such paranoia? Any advice gratefully received
Hello and welcome to TP. I hope you find the forum friendly and supportive.

Dementia presents with a lot of problems and their is an AS Factsheet that deals with some of the issues you mention. You can have a read by following this link https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/changes_in_behaviour.pdf
 

Elfrida

New member
Jul 29, 2018
1
Sheffield
Hello, I’m Elfrida.


My Dad is 83 and has mixed dementia. He has been in a care home for the last year but is now showing signs of aggression and wandering into other people’s rooms.
I see him once a week, sometimes twice if possible. We have had enjoyable visits but obviously these are becoming harder and harder.
I’m hoping to find helpful ideas, advice, encouragement and above all understanding here from everyone encountering the same learning curve that comes with dementia.
X
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hello, @Elfrida welcome to Talking Point. You will find that there are lots of us here in the same position as you. Please feel free to read some threads, and then maybe start your own when you feel ready. If you have any specific questions, concerns or just want to have a moan, there will be someone here to answer, advise or just listen!
 

karaokePete

Registered User
Jul 23, 2017
5,571
N Ireland
I've just joined, very late in the day. We live with my partner's 93yr old father who's had Alzheimer's for probably 4-5 yrs. He's still continent, and can walk with the aid of a stick. He's confused much of the time, can't really be left for very long because he gets very anxious, and I've become the primary carer. It's become increasingly difficult, and I've reached the end of my tether. We are taking him to a care home tomorrow for respite care, which if he settles, will become permanent because I've got an operation very soon, need recovery time, and we need a holiday. He seemed accepting of going into care, but tonight he's very distressed, very angry, and I'm realising that perhaps there are better ways of going about things. What do we do if he refuses to get out of the car???
Hello and welcome to TP. I hope you get support here.

I haven't faced your situation yet, however, I know that there are a number of AS Factsheets about Care Home issues so you may find some useful info in the list of publications, which you can find by following this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

I know from reading the forum that its a good idea not to discuss the matter and secretly pack a bag and just drop the person off. I also know that some have found it useful to say that it's they who need the break and so the loved one is just going to stay somewhere for a while where they can be cared for. Others have found it useful to say that its doctors orders for recuperation to build up strength as the older generation are more likely to take orders from a doctor that their own family.
 

canary

Registered User
Feb 25, 2014
12,939
South coast
Hello @Elfrida and welcome to Talking Point.
Wandering and some aggression is very common in dementia. At mums care home (a dementia unit) everyone seems to be constantly in and out of everyones room! No one at mums care home seemed worried about it. Is your dads care home unhappy about his behaviour? Some care home arnt prepared to accept this, unfortunately.
 

karaokePete

Registered User
Jul 23, 2017
5,571
N Ireland
Hello, I’m Elfrida.
My Dad is 83 and has mixed dementia. He has been in a care home for the last year but is now showing signs of aggression and wandering into other people’s rooms.
I see him once a week, sometimes twice if possible. We have had enjoyable visits but obviously these are becoming harder and harder.
I’m hoping to find helpful ideas, advice, encouragement and above all understanding here from everyone encountering the same learning curve that comes with dementia.
X
Hello and welcome from me too. I wonder if you might get some value from the AS Factsheet that can be read by following this link https://www.alzheimers.org.uk/sites...92.2135573463.1526295661-559654205.1505889693
 

ForresFlower

New member
Jul 29, 2018
2
Hi
My name is Connie and MinL was diagnosed with vascular dementia 6 years ago. My husband and brother have POA but brother lives at the other end of the country so the care is left to us. My main concern over the past few weeks is the increased frequency of TIA’s. She is on all the usual medication but from one every few months she’s now having them it seems almost daily. She recovers quite quickly from them but it’s leaving her drained and more confused than ever. We are going to GP this week, what should we expect him to do? Many Thanks.
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hello, @ForresFlower, welcome to Talking Point. My husband has vascular dementia too. I assume that your mil is already on medication for the symptoms that can cause TIA? For example my husband has medication for high blood pressure, high cholesterol and also a blood thinning drug. He has also been checked in hospital each time he has a TIA, but I assume this is the case for you too? In fact sometimes I have wondered if he has had an undiagnosed TIA, as he has sometimes been very pale, very tired and then very confused.
You will no doubt have the chance to ask the Dr what the plans for future treatment are.
 

ForresFlower

New member
Jul 29, 2018
2
Hello, @ForresFlower, welcome to Talking Point. My husband has vascular dementia too. I assume that your mil is already on medication for the symptoms that can cause TIA? For example my husband has medication for high blood pressure, high cholesterol and also a blood thinning drug. He has also been checked in hospital each time he has a TIA, but I assume this is the case for you too? In fact sometimes I have wondered if he has had an undiagnosed TIA, as he has sometimes been very pale, very tired and then very confused.
You will no doubt have the chance to ask the Dr what the plans for future treatment are.
Hi
Yes she’s on the same meds although up to a few years ago it was difficult to get her to take them. We’ve had GP out a few times to her but by the time he comes she’s up and back to “normal “. However 2 weeks ago when we were on holiday my daughter called round and she was on the sofa, couldn’t sit up, unresponsive etc. She was taken to hospital but of course was fine by the time she got there and was discharged. That’s caused a noticeable deterioration in her condition. Apparently there’s a TIA clinic we should be referred to so that’s why we’re going to GP. I’m so concerned she’s going to have a big stroke and have to go into care, I’d there anything else that we can do ?
 

Amethyst59

Registered User
Jul 3, 2017
5,749
Kent
Hi
Yes she’s on the same meds although up to a few years ago it was difficult to get her to take them. We’ve had GP out a few times to her but by the time he comes she’s up and back to “normal “. However 2 weeks ago when we were on holiday my daughter called round and she was on the sofa, couldn’t sit up, unresponsive etc. She was taken to hospital but of course was fine by the time she got there and was discharged. That’s caused a noticeable deterioration in her condition. Apparently there’s a TIA clinic we should be referred to so that’s why we’re going to GP. I’m so concerned she’s going to have a big stroke and have to go into care, I’d there anything else that we can do ?
These are questions to ask at the TIA clinic. I think, if there were a simple answer, we would all be doing it. Dementia is a vile disease, and I am so sorry that it has touched your family. My husband moved into a care home last Friday, though he was in a supported living apartment for a few months before that, so I guess we are further along the line than you. I don’t have any magic answers for you, except to say that the things we think we will never be able to cope with, or bear, actually we do. Partly because there is no choice, but also because we are often stronger than we think. The support you will receive from members on this forum will become invaluable to you.
 

KeepingOn

New member
Jul 29, 2018
2
Hi, I’m new. Thanks for the wisdom. I can’t see how to start a new thread.
Concerned about Loved One being moved in and out of temporary emergency dementia unit. His best life seems to be in the emergency dementia unit. As soon as he settles down there, though, they move him somewhere else (care home, nursing home) and he’s upset again; then they move him back to emergency ward, reassess, find him OK, move him out, and he’s upset again so he returns to emergency ward. and so on. He is 65, diagnosed 5 years ago. Any advice appreciated.
 

Szaitisja

Registered User
Jul 28, 2018
138
Hertfordshire
Hello. I only joined today and already enjoy this forum very much. So many people that understand what you might be trying to say even if you can't quite find the right words. I am looking after a friend who has been diagnosed with vascular dementia about 4 years ago. She will be 101 next week and is a lovely person with a wicked sense of humour and we do laugh a lot. It does get very lonely at times on the bad days and it's so good to find a place where people might understand. It's so difficult to explain to ones that haven't been through anything similar and hearing 'cheer up' when i need to get something of my chest just doesn't cut it.
 

karaokePete

Registered User
Jul 23, 2017
5,571
N Ireland
Hi, I’m new. Thanks for the wisdom. I can’t see how to start a new thread.
Concerned about Loved One being moved in and out of temporary emergency dementia unit. His best life seems to be in the emergency dementia unit. As soon as he settles down there, though, they move him somewhere else (care home, nursing home) and he’s upset again; then they move him back to emergency ward, reassess, find him OK, move him out, and he’s upset again so he returns to emergency ward. and so on. He is 65, diagnosed 5 years ago. Any advice appreciated.
Hello and welcome to TP. I hope you find the forum to be a friendly and supportive place.

I don't have any experience of the situation with the homes but have to say that it seems foolish to keep moving someone at this stage of dementia as it will always be upsetting. Maybe it would be an idea to have a word with the Social Worker to see if that merry go round can be halted.

As to posting on the forum, if you go back to page 1 of this thread you will see that the 1st post gave instructions and I hope you find that useful.

All the best to you.
 

KeepingOn

New member
Jul 29, 2018
2
Hello and welcome to TP. I hope you find the forum to be a friendly and supportive place.

I don't have any experience of the situation with the homes but have to say that it seems foolish to keep moving someone at this stage of dementia as it will always be upsetting. Maybe it would be an idea to have a word with the Social Worker to see if that merry go round can be halted.

As to posting on the forum, if you go back to page 1 of this thread you will see that the 1st post gave instructions and I hope you find that useful.

All the best to you.
Thank you for responding!
 
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