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Welcome to Dementia Talking Point! Find out more and say hello.

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lemonbalm

Registered User
May 21, 2018
1,712
0
Hello @Forgetmeknot

My 90 year old mum, who also has vascular dementia, has been in a care home for some years now. I looked after her for a couple of years before that. I have never told her that she had dementia, as it would have upset her and she wouldn't have believed it anyway. You know your mum best but, if the diagnosis upsets her a lot, it can be better to not refer to it at all, just to deal with the symptoms as they arise. If my mum was struggling, she was often comforted by my saying things like "never mind, I can remember that for you" or "oh your words have run away but I can speak "mum" so not to worry"

There are lots of us out here to help you along so do post again when you are ready to let us know how things are going.
 

Karensouth

New member
Jul 4, 2021
1
0
Hi, first time using Forum. I've found threads really helpful and particularly ones on family dynamics! I guess I'm venting my frustration here - a safe place to do it rather than open my mouth to my husband's family and say something I may regret.

My mum in law has dementia. She was a very assertive, hard working, generous woman, the matriarch of the family. Now, she has word finding and memory difficulties and recently, has been uncharacteristically very tearful.

My husband is her son and there are 3 daughters, one who lives with their mum and we live next door.

My husband is a loving son and he just gets on with helping his mum everyday. He doesn't make a fuss about it. Also, I put together a Power of Attorney for her a while back when she was just starting to have speech problems.

What has shocked me, is the barrage of verbal insults and even threats that myself and my husband have endured from his family, instigated by his sister who lives with the mum (mum/daughter relationship here has always been difficult). I wonder if it's related to jealousy surfacing as certain individuals refer to my husband as 'the golden boy'. Really, he's just a good son and his mum always recognised that.

Sadly, I see a family who apart from a very few exceptions, are either keeping away as much as they can (yet criticising us!), or in the case of the at home daughter, are venting their frustration by shouting at the mum or about us. My husband told his sister to stop being so verbally aggressive but it has intensified her attacks on us, even at one point lashing out accusing me of being an unfit mum!

I have an elderly mum who lives with my frail uncle and he has Parkinsons. My family just quietly help out. They don't shout and scream and blame others - suffice to say, I am struggling with my husband's family who are very much in that mould.

I feel sorry for my husband. He's always been very close to his mum. I also feel so angry with members of his family who should recognise what a good person he is and stop being armchair critics! It seems so wrong that my husband is doing his utmost whilst his sisters and in laws are avoiding helping with hospital appts even. At the moment our car is broke. Despite asking for help, his family claim they can't get off their work or they're 'unavailable',to drive their mum to one hospital appt. One daughter is even driving round in a car bought by the mum!

Sorry, rant over. I wish his family would prioritise their mum and stop lashing out at us. By staying away, they are losing the opportunity to have a meaningful chat/relationship with her.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,111
0
Kent
Welcome to the forum @Karensouth

There`s something about mothers and sons which can make daughters quite resentful. There`s also something about the dynamics of inlaws when compared to the dynamics of our own.

If your live in sister in law hears how wonderful your husband is when she is taking major responsibility for your mother it could be one cause of her resentment. Another is your organising the Power of Attorney. Was this discussed with the live in daughter or did you just go ahead intending it to be helpful?

I know enough about family dynamics from personal experience and with my own son`s inlaws have learnt to tread very carefully.

Please don`t think this is a criticism of you in any way. Sometimes an outsider can see what can be missed by those heavily involved. At other times, people like me can get it terribly wrong. If so, I apologise in advance.

Please start your own Thread in the forum I care for a person with dementia here.


As you have already read there are many who have family disagreements about responsibility for care and you will get different examples of support and experiences.
 

JoolzyB

New member
Jul 11, 2021
1
0
Hello

I've joined Talking Point as I have become carer for my mother who has Alzheimer's. She was diagnosed 3 and a half years ago but has really only needed me to start helping her with her life in the past year. And since we (my family and my mother) all relocated towards the end of last year, my mother's dementia has worsened considerably. I have taken early retirement to be able to look after her (she lives in an annexe by our house) but she is plagued by almost continual hallucinations which are making life very hard for her and me and my very supportive husband. I thought it would be good for me to join a forum like this so that I can hear about other people's similar experiences and how they handle them.
 

karaokePete

Registered User
Jul 23, 2017
6,255
0
N Ireland
Hello and welcome @JoolzyB

My wife was also plagued by hallucinations, which mad things difficult for us both. A chat with the GP and Memory Clinic resulted in some changes to medication and that helped, although didn't cure, the situation.

I hope you have time to look around the site as there is a lot of useful information and support here.
 

lemonbalm

Registered User
May 21, 2018
1,712
0
Hello @JoolzyB

That must be difficult for you. Do you have any help looking after your mother? I looked after my mum for a couple of years but she has been in a care home for several years now. She often used to think there were people in her flat and started to go out looking for people who had died years ago.

There are lots of us out here to help you along should you need it. You might want to start your own thread when you are ready in the forum:

 

FrancesM

New member
Jul 1, 2021
2
0
Hi
My Mum has recently been diagnosed with mixed dementia (Alzheimer’s and Lewy bodies). She used to care for her mother who had undiagnosed dementia and has been concerned she would 'go the same way' ever since. It is early stages - ACEII cognitive score 85 out of a hundred. She also has an under active thyroid which means she gets very tired which exacerbates the memory problems I think. She gets frustrated that people aren’t listening to her and I know I have been guilty of assuming she doesn’t know what she's talking about a couple of times when she’s then turned out to be right. I’m learning to listen to her properly and not assume anything. While she does repeat herself, misplaces things, forgets what she is doing and sometimes can’t remember words it doesn’t seem that her mental capacity is affected at the moment. I share many of those symptoms at times (as a menopausal woman!) but understand that for her this is much more than the occasional brain fog and must be very frustrating. I'm also not sure how much her current issues may improve in the short term once her thyroid medication is sorted out. As far as my Mum is concerned my focus at the moment is trying to make life enjoyable for her and appreciating the time we have with her while we can.
She lives with my Dad and he is her primary carer. Both are 82 and I have seen a massive decline in them both, but particularly him, since the first lockdown which I am sure is because they are not getting out as much. My big concern at the moment is that as I’ve started to get more involved in supporting them my Dad seems to be giving up. He seems to have decided that at 82 he is now ‘old’. I’m not sure if I’m being unreasonable in expecting him to keep doing things for himself when he hasn’t been diagnosed with anything that would prevent that. I’m happy to do everything for them if that’s what’s needed but not if it means Dad is going to decline. If anyone has any advice on how to support without making things worse I’d be grateful to hear it!
He suffered a serious episode of anxiety and depression a couple of years ago and I’ve no doubt that Mum’s diagnosis has him playing all sorts of scenarios through his head that he won’t be telling me about. I think he is having a difficult time coming to terms with the fact that he needs help although he keeps saying he's happy to accept help from wherever. I really don't want to see him go back to how he was.
Having read through a lot of the posts on this forum I can see it is going to be a big help as things progress. At the moment I’m just grateful that I have this time to make the most of having my parents around.
 

Cazcaz

Registered User
Apr 3, 2021
93
0
. My big concern at the moment is that as I’ve started to get more involved in supporting them my Dad seems to be giving up. He seems to have decided that at 82 he is now ‘old’. I’m not sure if I’m being unreasonable in expecting him to keep doing things for himself when he hasn’t been diagnosed with anything that would prevent that. I’m happy to do everything for them if that’s what’s needed but not if it means Dad is going to decline.
I had similar thoughts about my dad. He used to walk 20 miles every week but when my mum started to decline, even before the Alzheimer’s diagnosis, he stopped walking. In fact, He just stopped everything. I began to think he was declining, even though he has had no health issues (minor life long asthma but hasn’t had an attack for about 15 years). Then I suggested he go walking “a one off” “just for something different” etc. With me at home to help mum, just Trying to get him out of the house for one WHOLE day. Eventually, after a lot of persuading, it worked.
Now he’s back! He wants to go walking more, he laughs at things on tv more, he seems so much more relaxed.
maybe you could try the same thing. Think of something that would take your dad out of the house for one full day eg walking or golf or whatever. Having a break for an hour to do the weekly shop wasn’t helping my dad, but knowing he could ‘switch off’ for the entire day seems to have been the best medicine for him.
 

FrancesM

New member
Jul 1, 2021
2
0
I had similar thoughts about my dad. He used to walk 20 miles every week but when my mum started to decline, even before the Alzheimer’s diagnosis, he stopped walking. In fact, He just stopped everything. I began to think he was declining, even though he has had no health issues (minor life long asthma but hasn’t had an attack for about 15 years). Then I suggested he go walking “a one off” “just for something different” etc. With me at home to help mum, just Trying to get him out of the house for one WHOLE day. Eventually, after a lot of persuading, it worked.
Now he’s back! He wants to go walking more, he laughs at things on tv more, he seems so much more relaxed.
maybe you could try the same thing. Think of something that would take your dad out of the house for one full day eg walking or golf or whatever. Having a break for an hour to do the weekly shop wasn’t helping my dad, but knowing he could ‘switch off’ for the entire day seems to have been the best medicine for him.
Thanks Cazcaz - I'll give that a try. They have always done most things together so as Mum has started to tire easily they go out walking less and less. I think he may welcome the break as I know he finds it tiring being with her all day every day. I've been trying to persuade them for a while to get out for regular short walks but hadn’t thought about suggesting Dad go on his own.
Dad has just given up driving so I do want to make sure that doesn’t lead to them being even more housebound.
 

karaokePete

Registered User
Jul 23, 2017
6,255
0
N Ireland
Hello @FrancesM and welcome from me too. I hope you find the forum to be a friendly and supportive place.

I see you have had time to take a good look around the site - it's a goldmine for information, isn't it. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area(if open). If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., if any of that hasn't already been done. There is also a Dementia Guide in the list.


Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

Getting older

New member
Jul 21, 2021
1
0
Hi folks, I am a 51 year old male registered nurse.

I have joined the forum because it will help me support my residents better plus potentially myself and my family in the future.

The site appears to have extensive knowledge and real learning to draw from.

I became a dementia champion in the past to support staff and residents but have not run a session for a while, probably would benefit from an update as soon as I can schedule one in.
 

kindred

Registered User
Apr 8, 2018
2,735
0
Hi folks, I am a 51 year old male registered nurse.

I have joined the forum because it will help me support my residents better plus potentially myself and my family in the future.

The site appears to have extensive knowledge and real learning to draw from.

I became a dementia champion in the past to support staff and residents but have not run a session for a while, probably would benefit from an update as soon as I can schedule one in.
Welcome! I volunteer in a nursing home for dementia and have learned a lot from this forum. This forum also gave me superb support when my husband was dying of dementia. The more of us learning and offering skilled help the better, very welcome! Kindred
 

Argus

New member
Jul 24, 2021
1
0
Hi all, glad to join the group.
My 84 year old mum was diagnosed last week with Alzheimer’s, she lives with my dad who is main carer, but I’m trying to assist him with sources of advice, activity ideas and regular visits. There seems to be a wealth of info out there, which can itself be overwhelming for the carer. The pandemic has affected face to face activities, but hoping these open up soon, as hoping to persuade mum to go to singing groups (she loves singing), memory cafes, and reminiscing activities.
 

karaokePete

Registered User
Jul 23, 2017
6,255
0
N Ireland
Hello @Argus and welcome to the forum. You have come to the right place for information and support.

Whilst you can learn lots from threads on the forums, there is a publications list that covers all issues related to dementia and you can find that with this link https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list the list is useful for many things like understanding the issues and sorting out things like Power of Attorney, care needs assessments etc.

You can also do a post code check for support services in your area by following this link https://www.alzheimers.org.uk/find-support-near-you

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

lemonbalm

Registered User
May 21, 2018
1,712
0
Hello @Argus

I'm sure your Dad will be very grateful for your help. It's a difficult time for you all, adjusting to the diagnosis but you sound to be taking a very positive view. which is a great start. I hope that you can persuade your mum to go to singing groups. Music can be like magic for people with dementia and it will not only be good for her but also give your Dad a break. Keep posting as you go along. Lots of information, support and advice for you here.
 

nellbelles

Volunteer Host
Nov 6, 2008
9,310
0
leicester
Hello @Argus and a warm welcome to DTP from me also..

As @karaokePete mentions Power of Attorney is a good thing to set in place while your Mum is able to show some understanding of the procedure, the forms don’t need to be completed by a solicitor and you can register the forms yourself.
He has also given you some useful links which I hope will help.

I hope now you have found the forum you will continue to post for support and to share your experiences.
 

Jud57

New member
Jul 25, 2021
6
0
I have finally decided to register as I'm sure there are plenty of families going through what I'm going through. My mother is 96. I have been caring for her for a number of years. I have my husband and daughter's help although they have health issues. I have taken early retirement as I couldn't cope with everything.
We've got carers coming in twice a day now after a long battle getting my mother to accept them. She only wants me basically. She is incredibly stubborn and strong willed even now. She needs support for all her needs but thinks she can do everything independently.
I feel as if I am at the end of my tether. Thank you for the chance to off load!
 

nae sporran

Volunteer Host
Oct 29, 2014
8,101
0
Bristol
Hullo and welcome to the forum @Jud57. Well done on getting carers in twice a day. Sorry you still feel like you are at the end of your tether, it is so hard battling for everything and trying to be a carer at the same time.
Now that you have found us, I hope have a chance to read a few other threads and maybe start one of your own in the section https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/ where you will find advice and support from others who understand.
 
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