Welcome to Talking Point - introduce yourself here

Status
Not open for further replies.

Minnie-Jane

New member
Jul 7, 2018
4
0
Hi
My mother has dementia(unspecified type) having been diagnosed approximately 3 years ago.She has other health problems and is looked after at home by my sister who lives nearby and carers. I visit regularly to support her care.My sister and I are often at a loss to know how to support Mum best, her mood, behaviour being unpredictable and we have no idea what she is thinking much of the time as her communication is getting worse. A chance to share experiences with others is therefore welcome.
Minnie Jane
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,389
0
72
Dundee
Hi @Minnie-Jane and welcome to Talking Point.

I'm sorry to hear about your mum and understand how hard it must be for you and your sister. Talking Point is a great place to get ideas, ask for help and support or just indeed to have a rant if you need to.

I see you mention in your post that her communication is becoming worse. I'm not sure if this will be of any help but it might be an interesting read for you and your sister -

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
Welcome to TP @Minnie-Jane. I'm sorry your mum is having trouble communicating and you are all at a loss how to help. Sadly, that is quite common with dementia, and patience mixed with a sense of humour have got me this far.
Feel free t post more widely on your concerns on the "I care for someone with dementia" thread, You will certainly find a lot of support and good advice.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Hello, @Minnie-Jane ...this is a really hard situation for you and your sister. I am so glad that you have found Talking Point, you will find that the members are a brilliant source of information and support.
 

Minnie-Jane

New member
Jul 7, 2018
4
0
Welcome to TP @Minnie-Jane. I'm sorry your mum is having trouble communicating and you are all at a loss how to help. Sadly, that is quite common with dementia, and patience mixed with a sense of humour have got me this far.
Feel free t post more widely on your concerns on the "I care for someone with dementia" thread, You will certainly find a lot of support and good advice.
 

Jezzer

Registered User
Jun 12, 2016
984
0
Lincoln, UK
Hi
My mother has dementia(unspecified type) having been diagnosed approximately 3 years ago.She has other health problems and is looked after at home by my sister who lives nearby and carers. I visit regularly to support her care.My sister and I are often at a loss to know how to support Mum best, her mood, behaviour being unpredictable and we have no idea what she is thinking much of the time as her communication is getting worse. A chance to share experiences with others is therefore welcome.
Minnie Jane
Hi @Minnie-Jane. So sorry to hear about your mum. Sounds like you and your sister are doing a wonderful job but yes things get worse sadly. Has mum had an assessment or re-assessment lately? I was just thinking perhaps some support might help? TP has been a lifesaver for me and I hope you will find encouragement, friendship and support here, as I have. Please keep posting be it questions or just to offload. You are so welcome here. Warm Regards
 

MICEW

New member
Jul 8, 2018
3
0
After 2 years of memory problems, sometimes quite severe, and a lot of erratic behaviour and anxiety, I finally overrode my wife's objections and insisted we seek advice. She now awaits referral for specialist diagnosis. Hopefully this will come soon and we will be able to get on with things again. The spur to my action was that she had started to forget who I was on occasion, leading me to wonder how we might cope if it continued.
 

MikeyRhos

New member
Jul 8, 2018
2
0
Hi, I have worked in care for a number of years, I have worked my way up in the profession, I got fed up with the "money side" of care. Owners who appear to put their holiday above the care of residents. Management who lose touch with their residents and treat Carer sickness as an unwanted interruption and an annoyance. Where the money residents or families does not give the care deserved. Where homes spend as little as possible on standard of food and quality of life and spend more on the "can see" element. Also fed up with the fact that there is still no register of carers. Working with elderly is still seen as a job that anyone can do, They cannot, it is a profession and should be seen as one, but by those with the purse do not see it that way. If you have an opinion on care and put it into practice and it works, you are disciplined, severely !! This is just my experience and may be my bad fortune.
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
After 2 years of memory problems, sometimes quite severe, and a lot of erratic behaviour and anxiety, I finally overrode my wife's objections and insisted we seek advice. She now awaits referral for specialist diagnosis. Hopefully this will come soon and we will be able to get on with things again. The spur to my action was that she had started to forget who I was on occasion, leading me to wonder how we might cope if it continued.

Welcome to TP MICEW. That is hard to take when someone you care about forgets who you are, but hopefully you will get the diagnosis which should at least help your wife get the medication and support she needs.
When you are ready to ask for more detailed help or just want to let off steam you can post on https://forum.alzheimers.org.uk/forums/memory-concerns-and-seeking-a-diagnosis.26/ which is a good forum for you .
Good luck.
 

karaokePete

Registered User
Jul 23, 2017
6,568
0
N Ireland
Hello and welcome from me too @MICEW, I hope you find the forum a friendly, informative and supportive place.

It’s good that your wife is in the assessment process as conditions other than dementia can cause these symptoms and may be curable. If it turns out to be dementia then a diagnosis can open the possibility of treatments and support that can assist.

It is difficult when a spouse forgets you and it also happens to me. I just introduce myself by name and relationship and that seems to work for me. It hasn’t yet happened too often to me so I’m just hoping that I’m used to rolling with it by the time it may become more frequent. I think it’s important to know that the person may not remember a name/relationship but are likely to still feel safe with this person in front of them because any deep feelings are likely to continue to exist, even if buried under the dementia.

If you want to do a bit of research about dementia the publications list is a fantastic source of information and it can be found by following this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list
 

Janiedolittle

New member
Jul 8, 2018
1
0
Thank you for adding me. I have a Father-in-law who was diagnosed with Alzheimer’s 3 years ago, his memory is really poor, especially short-term, and he struggles to do anything for himself but he is a gentle soul and rarely gets upsets. He really enjoys his Alzheimer’s groups and has the ‘best day of my life’ every time he goes, especially to his singing group.

My own father is very different. A couple of months ago he had a ‘memory test’ on turning 80 at his GP’s (this was a ruse as he’d previously refused one many times) which didn’t go well and his GP has referred him for a CT (we think) scan and a home visit which we are waiting for. My sister has the same GP and has spoken to her as we’ve all been concerned about my dad for several years. He gets mixed up, can’t find the right word so substitutes random other words which often mean something entirely different and becomes very angry when he is contradicted. The GP said she has been aware that my dad has some form of dementia for several years but he had refused to allow her to check him over. He now has convinced himself the scan is for cancer (he has basal cell carcinomas) and that the home visit is to help the GP with a paper she is writing about skin cancers. We have no idea when the home visit/scan will be and his GP says that until he is ready to accept he has it and stop being in denial there is not much that can be done to help which we understand but are not sure if this is right.

Our biggest concern is his increasing aggression and agitation, especially towards our Mum. His aggression is verbal thankfully but still very distressing for everyone and we do worry incase it becomes physical as we think our mum would try to hide that from us. He’s a tall, physically fit man and she’s becoming quite frail. She is also in complete denial and is refusing to allow the ‘D’ word to even be mentioned. She says he is ill but getting better, I’m sure it’s frightening for her and she’s often in tears. He must feel very frightened too and although he’s always been authoritarian he was never aggressive in anyway, he would always appear very calm. He doesn’t apologise afterwards and it’s happening daily, multiple times a day and he can be really vile. Can anyone advise if there is something that can be prescribed for this? His rational self would hate to be like this and it must be as distressing for him even if he doesn’t show it. It’s been especially bad for the last few months and is rapidly getting worse.
Yesterday, in the heat, it was suggested by my brother who is visiting that he should change into shorts as it was too hot for the clothes he was wearing, he replied that he’d forgotten to pack shorts and was adamant he was on holiday and not in the garden of his own home where my parents have lived for over 40 years. He then got very confused and couldn’t remember how to get back into the house but was wondering around the garden very agitated.
We took some family photos on his birthday a few weeks ago and he was upset because we took them without him even though he was in the middle of the group he just couldn’t see/recognise himself. From what I’ve read, all these point to dementia plus his GP has done blood/urine tests, thyroid function tests etc and everything was normal and healthy and she says other causes have been ruled out.
Although we have known that he was getting confused for years, he’s always been a clever and practical man and he still seemed able to cope in every way apart from getting his words confused or forgetting them, we are really worried about this sudden, enormous deterioration. I am sure he must also be feeling very frightened himself and perhaps this is the cause of his verbal aggression and agitation. I don’t really know how long any diagnosis is going to take and what will happen once it is diagnosed. My father-in-law is on medication to slow down it’s progress and we would say his deterioration is very slow but his actual diagnosis, in a different part of the UK all
seemed to happen very quickly whereas nothing seems to be happening with my dad.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Hello, and welcome to Talking Point, @Janiedolittle. You ask about medication for your dad because of aggression, this is a question for the GP, I think. Could it be something your sister could tackle as she has the same GP? The other thing you mention is a sudden and drastic downturn in his symptoms. This can happen when the person with dementia has an infection of some type, maybe a urinary tract infection, or even just a cold. Or could he be dehydrated in this warm weather? Again, the GP would need to be involved. The GP could also trigger an assessment to try and get some support for your mother.
Sorry this is a bit single tracked...see the GP. Other members may have more helpful suggestions.
 

karaokePete

Registered User
Jul 23, 2017
6,568
0
N Ireland
Hello @Janiedolittle, a welcome to TP from me too.

After reading about the 'shorts' incident I wondered if any of the agitation comes from people 'disagreeing' with what your Father says. It is often said that we have to enter the world of the person with dementia and work with their 'truth'. An example would be saying something like 'I'll check the cases' and then pretending that a pair of shorts had been found and walking in with him so that he could change. It's a long shot, however, there's a great thread that gives some hints about this sort of thing and it can be found by following this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

There is also a Factsheet that explains some of the issues around aggressive behaviour and this is a link to that one https://www.alzheimers.org.uk/sites...ctsheet_dementia_and_aggressive_behaviour.pdf

I hope there's something in those that helps all of you.
 
Last edited:

TerryID

New member
Jul 9, 2018
1
0
Essex
Hi, my name is Terry, I'm 62 in body but about 35 in mind and I moved back in with my mum who is now 88 back in Jan 2013. She has carers who come in twice a day to do the things I really don't want to have to do :) but I take care of all her other needs.
I know I'm biased but she is so sweet and calm, not at all aggressive as I've heard some dementia sufferers can be. She has always been a quiet person but is even quieter now and rarely says anything at all, even in response to questions.
I am aware that so far I am having a much easier time than a lot of you but after 5 1/2 years I find myself on the brink so I'm finally reaching out. I do have siblings but they seem to be of the 'bury my head in the sand' variety and that 'Terry will deal with it'.
Well Terry is now having trouble 'dealing' with it, Terry is having trouble coping and he is having trouble staying on top of his frustration and not taking it out on his dear, sweet mum.
To be honest I don't know if this really is the place for me, I think I would benefit from someone I could share with more privately than this open forum but I'll watch from the sidelines for a while and may jump in later.
I have already read some of your stories and you all of you have my greatest respect and admiration for the way you care for those you love and how you are able to cope with and deal with what has to be done. I wish I was as strong as you are :)
 

nae sporran

Registered User
Oct 29, 2014
9,213
0
Bristol
Welcome to TP @TerryID. You will find plenty of support on here from others who know about the isolation and hardship of watching some you care about struggling due to dementia. I didn't really get involved much the first year or so I was on, so take your time and we will all be pleased to help or advise if and when you need it.

If you need to find more personal face-to-face support too, then can I suggest your local carers support centre on https://carers.org/. Our local centre in Bristol supports a great little group.
You can also look on http://www.alzheimers.org.uk/info/2...1360.1519998619-604353012.1519998619#!/search.

I hope any of that is helpful to you.
 

nellbelles

Volunteer Host
Nov 6, 2008
9,843
0
leicester
Hi @TerryID welcome to TP

No one person can do it all and no one person can be made to.

You sound at the end of your tether, maybe be time to get a reassessment of your Mum’s care needs and a carers assessment for yourself, you certainly cannot carry on like this for much longer.

I hope you find the forum a help and that you will stay with us and keep posting so we can support you
 

Chrissie 55

New member
Jul 8, 2018
3
0
Hi my names chrissie have recently had to put my mum in a home i am finding to hard to deal with the guilt
 

member74974

Registered User
Jun 30, 2018
41
0
Hi chrissie

My husband is an only child, and we both felt terrible when we had to put his mother in a home. And we had to clear her flat to sell it to pay for the home too, that was hard. For a very short time she was unhappy, then she was so happy!

She made friends, relaxed, laughed, fooled around, showed enormous affection for the staff, hugging and kissing them. I’d never seen her like that. It was the best thing we could have done. It left us with happy memories of those last two years.

But at the time, it felt absolutely dreadful. So try to be positive. Plenty of people here have been in the same situation and will be able to comfort and help you.
 
Status
Not open for further replies.

Recent Threads

Members online

Forum statistics

Threads
139,004
Messages
2,002,113
Members
90,775
Latest member
Jackiejan