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Virtual Support groups

Karen Louise

New member
Aug 10, 2020
5
Hi, my mum was diagnosed with vascular dementia Jan 2018 and since COVID I have seen such a decline in her memory, behaviour and her anxiety is through the roof. She is in her own home, I had to get Carers going in three times a day to give her meds, help her prepare her lunch or dinner then a half hour ‘social call’ During COVID. I now don’t think I can stop them as she has de lined so much, it’s heartbreaking the calls she makes to be...it’s not so much the relentlessness of them but more the heartbreaking. I am thinking about joining a support group so I can talk to people who have or are going through the same challenges I face dealing with mums illness but then I saw this forum group. Does anyone know of a virtual support group that they would recommend also? am at my wits end often, keep supporting mum emotionally of course but it is starting to take its toll. Thank you in advance.
 
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Louise7

Registered User
Mar 25, 2016
2,377
Welcome to the forum @Karen Louise There's loads of friendly advice and support here - it's the best 'virtual support group' there is :D There are many here who have faced the same challenges as you, or are going through the same things at the moment, and you'll receive lots of useful advice to help. It's really hard being a carer, and the covid situation has made things a lot worse for a lot of people. Just talking here to others who know how you are feeling helps, plus it's also a good place to vent and let off steam when things get too much. My mum has alzheimers and is now in a care home and over the last few years this forum has been a real lifeline in navigating the various challenges that carers face. No one judges you here so please continue to post as there is always someone listening.
 

Karen Louise

New member
Aug 10, 2020
5
Welcome to the forum @Karen Louise There's loads of friendly advice and support here - it's the best 'virtual support group' there is :D There are many here who have faced the same challenges as you, or are going through the same things at the moment, and you'll receive lots of useful advice to help. It's really hard being a carer, and the covid situation has made things a lot worse for a lot of people. Just talking here to others who know how you are feeling helps, plus it's also a good place to vent and let off steam when things get too much. My mum has alzheimers and is now in a care home and over the last few years this forum has been a real lifeline in navigating the various challenges that carers face. No one judges you here so please continue to post as there is always someone listening.
Thank you @Louise7 for your reply...I feel so lonely at times and without any answers on how to help mum. Recently she’s felt like she’s on a high slightly manic packing like mad and pleading with me to pick her up and just take her home. She now doesn’t see her home as her own, she’s lived there for 15 years. I am blaming the virus on why I can’t move her and most times it works but she’s always in floods of tears as wants to be home and feel safe. Social care are suggesting a live in carer but when mum can mainly look after herself ie dress herself and doesn’t like the carers three times a day to stay any longer than the half hour they do how will she ever cope with someone living with her?? Mum is lonely for sure as she phones me so much with nothing to say just that she’s bored and if she was at home at least she could potter. I am exhausted with no idea what to do next. Mum won’t go to day centres as sees them as being for old people and she won’t know anyone! Is this all just part and parcel of the illness and whatever I do won’t be enough?? I just don’t want mum to be so lonely scared and anxious all the time. She is on a new medication but it’s not working as well as they had hoped! Which isn’t a helpful response from the consultant. Sorry to moan.
 

Karen Louise

New member
Aug 10, 2020
5
Welcome from me too @Karen Louise

I agree with @Louise7 - this is the best virtual place to be for carers of PWD... it helped keep me sane while I was caring for my dad :)
Thank you also for your reply I appreciate it...I am struggling now to Know how else to help mum, she’s just so lonely. I tried befriending services and with a minimum of 2.5hrs service mum is bored of their company by then!
 

Baker17

Registered User
Mar 9, 2016
717
Hi, my mum was diagnosed with vascular dementia Jan 2018 and since COVID I have seen such a decline in her memory, behaviour and her anxiety is through the roof. She is in her own home, I had to get Carers going in three times a day to give her meds, help her prepare her lunch or dinner then a half hour ‘social call’ During COVID. I now don’t think I can stop them as she has de lined so much, it’s heartbreaking the calls she makes to be...it’s not so much the relentlessness of them but more the heartbreaking. I am thinking about joining a support group so I can talk to people who have or are going through the same challenges I face dealing with mums illness but then I saw this forum group. Does anyone know of a virtual support group that they would recommend also? am at my wits end often, keep supporting mum emotionally of course but it is starting to take its toll. Thank you in advance.
@Karen Louise, Hi, my local memory matters group run a virtual support group weekly, we did meet up every week but due to the current circumstances we’re doing it virtually. I also volunteer at our local Carers association and am running a virtual support group weekly there on zoom. So it might be worth enquiring at those two places.
 

canary

Registered User
Feb 25, 2014
13,418
South coast
Is this all just part and parcel of the illness and whatever I do won’t be enough??
The home your mum is looking for is a state of mind rather than a physical place. Often the home they say they want to go to is a childhood home, but there are people who are still living in the house they were born in who still say they want to go home. What they are asking for is to be able to leave behind the confusion of dementia and go somewhere that they feel safe and understand what is happening.

When the confusion reaches this level they also often develop a fear of being on their own. If they cannot see someone every minute that they are awake they become anxious and fearful - they dont know where they are, they dont know how long they have been on their own, how long this will go on for, where everyone else is (or even if there is anyone else) or what they are doing there.

Unfortunately, once someone is actually with them they forget that they have been afraid of being on their own, although the anxiety remains as a nebulous fear that they cant quite put their finger on why, so they "invent" spurious stories to account for it. They also still know that they are meant to be the mistress of the house, so anyone who comes in who they dont recognise gets thrown out.

If you took her back to your home she would still be looking for her "home" and may well think that she is living in her own home, become aggressive and try and throw you out.

My mum reached the stage you are describing and it was a nightmare. I tried mum staying with me to see whether I would be be able to look after her in my home. It was a disaster and I lasted 3 days. The situation was only resolved after mum moved to a care home. She didnt want to, but after she ended up in hospital there was no choice. In fact, once she settled, she thrived in her care home and was happy.
 

Karen Louise

New member
Aug 10, 2020
5
@Karen Louise, Hi, my local memory matters group run a virtual support group weekly, we did meet up every week but due to the current circumstances we’re doing it virtually. I also volunteer at our local Carers association and am running a virtual support group weekly there on zoom. So it might be worth enquiring at those two places.
thank you so much!
 

Karen Louise

New member
Aug 10, 2020
5
The home your mum is looking for is a state of mind rather than a physical place. Often the home they say they want to go to is a childhood home, but there are people who are still living in the house they were born in who still say they want to go home. What they are asking for is to be able to leave behind the confusion of dementia and go somewhere that they feel safe and understand what is happening.

When the confusion reaches this level they also often develop a fear of being on their own. If they cannot see someone every minute that they are awake they become anxious and fearful - they dont know where they are, they dont know how long they have been on their own, how long this will go on for, where everyone else is (or even if there is anyone else) or what they are doing there.

Unfortunately, once someone is actually with them they forget that they have been afraid of being on their own, although the anxiety remains as a nebulous fear that they cant quite put their finger on why, so they "invent" spurious stories to account for it. They also still know that they are meant to be the mistress of the house, so anyone who comes in who they dont recognise gets thrown out.

If you took her back to your home she would still be looking for her "home" and may well think that she is living in her own home, become aggressive and try and throw you out.

My mum reached the stage you are describing and it was a nightmare. I tried mum staying with me to see whether I would be be able to look after her in my home. It was a disaster and I lasted 3 days. The situation was only resolved after mum moved to a care home. She didnt want to, but after she ended up in hospital there was no choice. In fact, once she settled, she thrived in her care home and was happy.
Thank you @canary for you detailed and really helpful reply. I appreciate you taking the time.
 

Louise7

Registered User
Mar 25, 2016
2,377
Hi @Karen Louise sorry I missed your reply to my earlier message but hope things are a little better for you now that you've found us here and will get support from others who have been through the same situation.
 

Whisperer

Registered User
Mar 27, 2017
195
Dear @Karen Louise

Please forgive me but one of your comments literally made me instantly laugh. My mum to would not go to a day centre “because they are for old people”. I feel like saying mum you are going on ninety where about on the age scale do you place yourself? Complete waste of time to ask but seeing your words hit my funny bone.

@canary explained the wanting to go home feeling very well. Not the bricks and mortar but the emotional security. Nothing really you can do except as you have been doing and tell a love lie. Best wishes
 

Louise7

Registered User
Mar 25, 2016
2,377
Dear @Karen Louise Please forgive me but one of your comments literally made me instantly laugh. My mum to would not go to a day centre “because they are for old people”. I feel like saying mum you are going on ninety where about on the age scale do you place yourself? Complete waste of time to ask but seeing your words hit my funny bone.
My mum said exactly the same thing about day centre but when she went "just to try it out" she loved it and didn't mention the 'old people' there once.
 

Whisperer

Registered User
Mar 27, 2017
195
My mum said exactly the same thing about day centre but when she went "just to try it out" she loved it and didn't mention the 'old people' there once.
Dear @Louise7.

Thank you for your comment. Unfortunately mum is still a very self contained person, very private, never much liked getting involved. Years ago we came out from seeing a consultant who had just advised mum needed a double heart bypass. I said we should tell my siblings with her answer being “we will tell the others after it is all done”. That’s right mum I will hide the operation date from them, the recovery period, god knows how I will explain if anything goes wrong. LOL. Same when we went to the Memory Clinic in 2017. In the following years my siblings pretending nothing wrong whilst I explained to them via email what has been happening to their mum. Mum just wanted things to be “normal” and would even now be upset if either of them just said straight out look mum we understand what is happening to you. Memory shot to pieces but that deep down private reserve still very important to her. Not wanting to tell others and worry them.
 

Betty65

Registered User
Aug 12, 2020
22
Hi, my mum was diagnosed with vascular dementia Jan 2018 and since COVID I have seen such a decline in her memory, behaviour and her anxiety is through the roof. She is in her own home, I had to get Carers going in three times a day to give her meds, help her prepare her lunch or dinner then a half hour ‘social call’ During COVID. I now don’t think I can stop them as she has de lined so much, it’s heartbreaking the calls she makes to be...it’s not so much the relentlessness of them but more the heartbreaking. I am thinking about joining a support group so I can talk to people who have or are going through the same challenges I face dealing with mums illness but then I saw this forum group. Does anyone know of a virtual support group that they would recommend also? am at my wits end often, keep supporting mum emotionally of course but it is starting to take its toll. Thank you in advance.
Ooh I am with you big time. My mum had a heart attack in January which has ramped up the dementia. She realty needs to be in a care home but is digging her heels in. Please be careful, I am a strong independent person but a couple of weeks ago something snapped. I was angry, crying and throwing things - definitely not my style. After coming on here I realise it’s called carers breakdown and so many people have gone through it. I wouldn’t wish it on anyone and I have stepped away from my mum for a couple of weeks and am just starting to go back but it’s difficult. Would you consider a home for your mum? I say this with the best intentions and we all need a back up plan.