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Advise needed

Frank24

Registered User
Feb 13, 2018
155
0
Hi everyone, I wondered if anyone can advise me. My mum has now been in a care home for a year. Not really communicating at the moment, although she can say some sentences. Not able to move or do anything for herself really at all. The GP suspects an underlying condition possibly cancer either blood or reemergence of bowel. Tests would be distressing at this stage, and Mum wouldn't be a candidate for treatment. I went to see her at the weekend, first time I have been allowed to visit in her room due to Covid. Previous visits have occurred in the visitors lounge or garden or window visits but they now don't feel like Mum should be ferried around I don't think.
For some reason, seeing her sat in her room has hit me really hard. The reality is the care home is a long distance away from where I live and practically it is difficult for me to visit too much. Im wondering how other people have coped with this stage? I don't think Mum knew who I was, or why I was there. Ive been invited to a birthday meal they have for all residents who have a birthday in July plus 1 visitor each at the end of the month and to say I am dreading it is an understatement. I don't feel strong enough emotionally to deal with it but equally don't want mum to be the only person who doesn't have a family visitor. No one else in my family is supportive who could go in my place apart from other relatives who live a very long way away. Most of the visiting is on me as other family members have indicated to me that they would prefer to remember my Mum as she was. After a horrific year, (actually make that 5!!!) and having a hard time at my job plus dealing with this reality I feel like I am going to hit rock bottom. Thanks for reading.
 

canary

Registered User
Feb 25, 2014
15,703
0
South coast
Oh, thats tough. Im sorry to hear about your mum.

Firstly, I would like to say - you dont have to go if you dont want to. Your mum wont know one way or another, take no notice of what anybody else might think and dont be guilt tripped into going.

Having said that, you might find that with having other relatives around to talk to, you might find this eases the situation and it will be less daunting than you fear.

But dont go if you dont want to.
xx
 

Frank24

Registered User
Feb 13, 2018
155
0
Thank you Canary.
Im quite a bit younger than all the other relatives, or so I have been told by the care home. My mum had me late in life!
It just sounds like an awkward day out, involves taking another day off work, but it would mean I could spend significantly longer with Mum that I have been able to for the last year. Undecided!
 

canary

Registered User
Feb 25, 2014
15,703
0
South coast
Im in my early 60s now and in my 50s when mum was living in her care home, so I was one of the younger ones too, but I found the other relatives very relatable - they know exactly what it is like. Its bit like on here - I have very little idea of how old everyone is, but it really doesnt matter.
 

lemonbalm

Registered User
May 21, 2018
1,731
0
Hello @Frank24

Oh, I've dreaded every party and celebration at mum's care-home over the past few years. Mum always got distressed by the fuss and noise and I felt they were really for the visitors more than the residents. Now that mum is nearing the end of her life and mainly sleeping in her room, were there a celebration of any sort I think she would be far better off in her room away from it. It sounds as though your mum may be better away from this celebration too. Do the staff really feel that she would enjoy it?

Personally, I think this would be a bit of a waste of visiting time. That should be for you to spend time with your mum, not to endure something you are dreading which may drag on for ages. Visiting is hard enough, please try to make it easier for yourself, at a time that you have chosen and under your control.
 

DreamsAreReal

Registered User
Oct 17, 2015
127
0
If I’ve understood correctly, you’ve been invited to a meal with all the July birthdays plus a relative for each? I wouldn’t want to go either. I don’t do crowds (social anxiety). I agree with Canary, don’t go if you don’t want to. Your mum probably won’t be the only one with no guest and won’t notice anything amiss. No doubt the staff will give her some extra attention. Maybe do a birthday visit on another day instead? But only if you want to!
 

canary

Registered User
Feb 25, 2014
15,703
0
South coast
Hi @lemonbalm
I can see that in your mums case it would indeed be a waste of a visit. I think it depends very much on what they are like. Mum enjoyed parties and celebrations right up to the end. I suppose I was also thinking about the way that I used to visit mum, which was pre covid, so I got to know all the other residents and their relatives, so it felt very much like an extended family. If I had ben visiting during covid that would have been one of the things that I would have missed.
There is probably no right or wrong thing to do
 

lemonbalm

Registered User
May 21, 2018
1,731
0
Hi @lemonbalm
I can see that in your mums case it would indeed be a waste of a visit. I think it depends very much on what they are like. Mum enjoyed parties and celebrations right up to the end. I suppose I was also thinking about the way that I used to visit mum, which was pre covid, so I got to know all the other residents and their relatives, so it felt very much like an extended family. If I had ben visiting during covid that would have been one of the things that I would have missed.
There is probably no right or wrong thing to do

Hi @canary
Oh yes, I agree that it depends upon the person and there is no right or wrong, and my question about whether Frank24's mum would enjoy it was a genuine one. It seems unlikely if she and the staff feel she should not be ferried around.
 
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Frank24

Registered User
Feb 13, 2018
155
0
Hello @Frank24

Oh, I've dreaded every party and celebration at mum's care-home over the past few years. Mum always got distressed by the fuss and noise and I felt they were really for the visitors more than the residents. Now that mum is nearing the end of her life and mainly sleeping in her room, were there a celebration of any sort I think she would be far better off in her room away from it. It sounds as though your mum may be better away from this celebration too. Do the staff really feel that she would enjoy it?

Personally, I think this would be a bit of a waste of visiting time. That should be for you to spend time with your mum, not to endure something you are dreading which may drag on for ages. Visiting is hard enough, please try to make it easier for yourself, at a time that you have chosen and under your control.
Hi Lemonbalm,
Thanks for responding. It makes me feel better that Im not the only one who feels like this is a form of pure torture. I think one of the difficulties of Covid is that the visiting has been so restricted that I don't feel at home there as I have never spent any sort of time there excluding 30 min prison style visits so there is a feeling of remove and as my Mum seems only very removed from me - it all feels a bit strange and of course heartbreaking. I was DEF made to feel that it would be totally remiss of me not to attend. I really am in two mind - she still enjoys the occasional glass of wine so I feel like I should go so she can have this! There's really not much else I can do for her these days which is so sad. I feel relived to realise that these feelings are normal and probably felt up and down the country. There is a tendency from other people whose parents DONT live in a care setting to frame these type of visits in a toxic positive way.
I suppose my Mum is not in the camp of residents that will enjoy it and get something out of it, and not in the camp of someone who won't enjoy it... probably somewhere in the middle...
 

Frank24

Registered User
Feb 13, 2018
155
0
If I’ve understood correctly, you’ve been invited to a meal with all the July birthdays plus a relative for each? I wouldn’t want to go either. I don’t do crowds (social anxiety). I agree with Canary, don’t go if you don’t want to. Your mum probably won’t be the only one with no guest and won’t notice anything amiss. No doubt the staff will give her some extra attention. Maybe do a birthday visit on another day instead? But only if you want to!
You've understood COMPLETELY. Its also giving me social anxiety and making me feel like a bad daughter all in one.
So much of this year has been about just getting by, and things not really being ideal. I do also wonder how visits are still restricted, I have to ask for special treatment to visit at the weekend when I am not working, and they can hold a dinner for relatives. I know they are trying to do something jolly and I know I sound like a moaner! x
 

lemonbalm

Registered User
May 21, 2018
1,731
0
Hi Lemonbalm,
Thanks for responding. It makes me feel better that Im not the only one who feels like this is a form of pure torture. I think one of the difficulties of Covid is that the visiting has been so restricted that I don't feel at home there as I have never spent any sort of time there excluding 30 min prison style visits so there is a feeling of remove and as my Mum seems only very removed from me - it all feels a bit strange and of course heartbreaking. I was DEF made to feel that it would be totally remiss of me not to attend. I really am in two mind - she still enjoys the occasional glass of wine so I feel like I should go so she can have this! There's really not much else I can do for her these days which is so sad. I feel relived to realise that these feelings are normal and probably felt up and down the country. There is a tendency from other people whose parents DONT live in a care setting to frame these type of visits in a toxic positive way.
I suppose my Mum is not in the camp of residents that will enjoy it and get something out of it, and not in the camp of someone who won't enjoy it... probably somewhere in the middle...

We probably haven't helped you to decide either way @Frank24 . Whatever you decide, it will be ok. If you do go, it's only a day and if you don't go it's still only a day.

You'll probably agonize over it and then find it's been cancelled (a no guilt scenario). I'm quite surprised the care home are organizing a get together at present.
 

Jaded'n'faded

Registered User
Jan 23, 2019
2,023
0
High Peak
You've understood COMPLETELY. Its also giving me social anxiety and making me feel like a bad daughter all in one.
So much of this year has been about just getting by, and things not really being ideal. I do also wonder how visits are still restricted, I have to ask for special treatment to visit at the weekend when I am not working, and they can hold a dinner for relatives. I know they are trying to do something jolly and I know I sound like a moaner! x
Visiting my mother by herself was bad enough. Some of the residents I passed on the way to her room made me very uncomfortable. I can't imagine anything worse than having to sit not only with my mother but a bunch of other people's loved ones with dementia too.

I'm not good at smiling cheerfully and pretending it's a 'normal' happy occasion when it really isn't.
 

Frank24

Registered User
Feb 13, 2018
155
0
We probably haven't helped you to decide either way @Frank24 . Whatever you decide, it will be ok. If you do go, it's only a day and if you don't go it's still only a day.

You'll probably agonize over it and then find it's been cancelled (a no guilt scenario). I'm quite surprised the care home are organizing a get together at present.
LOl. I know - the dream is it gets cancelled. I am really surprised. Its like zero to something else. I think its a strange use of resources - would much rather not have a three course meal on the care home. am glad im not the only one who thinks its strange..
 

Frank24

Registered User
Feb 13, 2018
155
0
Visiting my mother by herself was bad enough. Some of the residents I passed on the way to her room made me very uncomfortable. I can't imagine anything worse than having to sit not only with my mother but a bunch of other people's loved ones with dementia too.

I'm not good at smiling cheerfully and pretending it's a 'normal' happy occasion when it really isn't.
Really glad its not just me that finds this type of thing difficult. Im not too freaked out by the other residents - more making eye contact with their relatives who probably in all likelihood don't want to be there either. From the stress of getting the train, to waiting for the covid test to come back etc its all pretty unenjoyable.
 

DreamsAreReal

Registered User
Oct 17, 2015
127
0
. Its also giving me social anxiety and making me feel like a bad daughter all in one.
I understand, I also get the guilt and the feeling of being a bad Daughter. If we really were bad Daughters, we wouldn’t give a hoot!! Tbh, I’ll take the guilt any day over the stress and anxiety of going to a function of any kind. Jmho x
 

Bettyblue1666

New member
Jul 18, 2021
1
0
Hello .

No one enjoys a dementia unit - it is upsetting at times. But you need to get used to it if you are to accept the disease - other visitors can be a great support and wealth of information. I don’t want to sound harsh. I would add that very distressed behaviours can be red flags pointing to lack of proper dementia care - ignored pain, insufficient hydration and nutrition, being left in wet soiled nappies etc. Isolation and insufficient kindness and compassion of carers can also be upsetting for a person with the disease. Never just assume distress is always part of dementia.

We should never assume a person with dementia no longer knows us. Even in late stage there can be glints of a connection and we can give comfort and love in that moment. Your mother may not need you for that social gathering if it’s not appropriate but I’d always suggest celebrating all special occasions as best you can. Even if you sit quietly and talk to them with photos and a hug.

Under the Human Rights Act your mother has the right to maintain contact with her family and loved ones. Can she be moved closer to you?

I’d question why you are not allowed to visit her on weekends? This would concern me.
Is it Covid? You have a right to see her - unless a covid rule is restricting this. Do you have Lasting Power of Attorney Welfare/Deprivation of Liberty 1st person? Unless it’s covid related never just accept being prevented from visiting especially weekends (in my experience this was when most care neglect took place).

Dementia homes are particularly noisy as evening progresses - known as Sun downing’. Sufferers can seem more vocal, irritated and for those who can wander it’s usually now that the walking becomes quite noticeable - manic even. So avoid those times when visiting if you can.

I wish you and your mother a peaceful dementia journey.
 
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Frank24

Registered User
Feb 13, 2018
155
0
Ive decided to attend the lunch on Friday after learning that the relatives that live near didn't go on her actual birthday. Im all my Mum has really so I feel duty bound to attend.
 

lemonbalm

Registered User
May 21, 2018
1,731
0
Well done @Frank24 . It will be fine . It's only a day and, you never know, it might actually be fun after all. Now that you've decided, just assume it will be and give it your best shot. Everyone will be making an effort and there will be plenty of staff around. Come back and tell us how it went.

I remember going to a pantomime with most of the care home residents and staff one Christmas (no transport, we packed the residents into our own cars). I was absolutely dreading it. In the end, it was rather like one of those Pink Panther films that Peter Sellers was in. Touching, occasionally excruciating, absolute chaos and actually quite funny in a gentle way.
 
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Frank24

Registered User
Feb 13, 2018
155
0
Well done @Frank24 . It will be fine . It's only a day and, you never know, it might actually be fun after all. Now that you've decided, just assume it will be and give it your best shot. Everyone will be making an effort and there will be plenty of staff around. Come back and tell us how it went.

I remember going to a pantomime with most of the care home residents and staff one Christmas (no transport, we packed the residents into our own cars). I was absolutely dreading it. In the end, it was rather like one of those Pink Panther films that Peter Sellers was in. Touching, occasionally excruciating, absolute chaos and actually quite funny in a gentle way.
Thanks Lemonbalm. Trying not to feel too anxious about it. Deciding is half the battle. Hopefully!
 

Frank24

Registered User
Feb 13, 2018
155
0
Lunch cancelled. Chef been pinged! Going anyway for a room visit. All this stress for no reason.
Typical isn't it. Looking forward to seeing Mum now without the extra pressure of this lunch! X