What it’s like

RobinH

Registered User
Apr 9, 2012
264
0
London
We’re driving back to Mum’s house, after our regular day out. “What shall we sing?” I ask. She only remembers one song.

“Do we know one called ‘haven’t we had a lovely day out’”? she replies. I’ve been doing this 6 years, and 99 times out of 100 I’d be fine, but it chokes me right up.

“No. How about ‘Bubbles’”? We sing ‘Bubbles’. “Fortune’s always hiding, I’ve looked everywhere”. She’s flat, but sings with conviction.

We drop into the supermarket. I have a list for me and a list for her. I can’t find them. “Do you want to come in, or shall I whip round quickly?” – “yes, you go in, I’ll wait in the car”. I put Radio 3 on quietly for her.

I’m gone 5 minutes. She doesn’t know that, because after 2 minutes she’s forgotten when I left or where I went. All she knows is she’s in a dark car park on her own. When I come back, she opens the car door and waves. I know something’s wrong. I say Hi, but she starts crying uncontrollably. “I knew you wouldn’t leave me”, she sobs. I tell her I’ve only been 5 minutes, and she does believe me, but it doesn’t help.

I can’t get her to stop crying. I know it’s because she knows I’ll be leaving soon. I know she cries every time I leave, and she tries not to let me see it. Now I try to wait until the evening carer comes, or phone someone and leave mum talking to them. It helps a bit. I want to make sure this is the ‘normal’ crying, not something else. I ask her if she’s scared when I leave, or lonely. She’s lonely.

We have a conversation we’ve had about 20 times – of course she doesn’t know that. “The only way I can stop you being lonely is if you move to live with lots of people. Then you never need to be on your own”. She goes through all the reasons to stay in her house, where she’s lived for 44 years. Most of them are mistaken – she can’t conceive of how her future life will be. I correct each one in turn, but it doesn’t sink in. I’ve tried to think of how to explain it to her, but drawn a blank.

She’s still crying when the carer arrives. It occurs to me that the carer will think I’ve done something, but she knows mum well enough, and sees mum crying most visits. The three of us continue the conversation. Mum doesn’t recognise the carers, so she thinks this one has come especially to sort out where she should live. Mum’s slightly calmer when I leave. I’ll see her again in 4 days, but for her 4 days has no meaning. She may not be as bad next time. When this started I was a mess – when she cried, I cried. Now I’m harder, and I hate that I had to get that hard.
 

Noorza

Registered User
Jun 8, 2012
6,541
0
Your love shines through, I just want to let you know that your post has made me cry. not out of sadness but because I can see how you love her, and how cruel this disease is.

If people judge, it is only because they don't understand, here people understand.
 

Izzy

Volunteer Moderator
Aug 31, 2003
74,389
0
72
Dundee
What's a touching post. I remember that feeling when we had to leave mum when we lived in another city. You're clearly doing your best for her and thinking of all the positive strategies you can to help her.
 

lil50

Registered User
Nov 5, 2013
23
0
West Sussex
We've had a lovely day

We’re driving back to Mum’s house, after our regular day out. “What shall we sing?” I ask. She only remembers one song.

“Do we know one called ‘haven’t we had a lovely day out’”? she replies. I’ve been doing this 6 years, and 99 times out of 100 I’d be fine, but it chokes me right up.

“No. How about ‘Bubbles’”? We sing ‘Bubbles’. “Fortune’s always hiding, I’ve looked everywhere”. She’s flat, but sings with conviction.

We drop into the supermarket. I have a list for me and a list for her. I can’t find them. “Do you want to come in, or shall I whip round quickly?” – “yes, you go in, I’ll wait in the car”. I put Radio 3 on quietly for her.

I’m gone 5 minutes. She doesn’t know that, because after 2 minutes she’s forgotten when I left or where I went. All she knows is she’s in a dark car park on her own. When I come back, she opens the car door and waves. I know something’s wrong. I say Hi, but she starts crying uncontrollably. “I knew you wouldn’t leave me”, she sobs. I tell her I’ve only been 5 minutes, and she does believe me, but it doesn’t help.

I can’t get her to stop crying. I know it’s because she knows I’ll be leaving soon. I know she cries every time I leave, and she tries not to let me see it. Now I try to wait until the evening carer comes, or phone someone and leave mum talking to them. It helps a bit. I want to make sure this is the ‘normal’ crying, not something else. I ask her if she’s scared when I leave, or lonely. She’s lonely.

We have a conversation we’ve had about 20 times – of course she doesn’t know that. “The only way I can stop you being lonely is if you move to live with lots of people. Then you never need to be on your own”. She goes through all the reasons to stay in her house, where she’s lived for 44 years. Most of them are mistaken – she can’t conceive of how her future life will be. I correct each one in turn, but it doesn’t sink in. I’ve tried to think of how to explain it to her, but drawn a blank.

She’s still crying when the carer arrives. It occurs to me that the carer will think I’ve done something, but she knows mum well enough, and sees mum crying most visits. The three of us continue the conversation. Mum doesn’t recognise the carers, so she thinks this one has come especially to sort out where she should live. Mum’s slightly calmer when I leave. I’ll see her again in 4 days, but for her 4 days has no meaning. She may not be as bad next time. When this started I was a mess – when she cried, I cried. Now I’m harder, and I hate that I had to get that hard.

Dear RobinH how your message reverberated with me.
I live forty miles from my 91 year old Mum and visit twice a week.
The difference with my Mum is that she will cry when I arrive. She says they are tears of joy as she is so pleased to see me, she is lonely and says she never sees anyone.
Of course she does, she has carers four times a day, very kind neighbours and extended family who only live five minutes away, but she forgets.
She seems to sense when it is nearly time for me to leave and will repeat "Haven' t we had a lovely day" She is lonely and sometimes frightened I am sure.
When she was first widowed in August last year my brother and I tried to share her 24hr care . After six months with our own health suffering we had to admit defeat and call SS.
Though carers visit she will only accept her medication, no other help at all. She refuses day-care. Now her doctor says she needs 24hr care.
She really believes she still does everything herself.
At a recent Best Interests meeting she repeatedly threatened to cut her throat if she was put in a care home. However as soon as we took her home she told us she thought she would be better off in a home.
I feel so dreadfully sorry for her. I used to cry all the way home- not to be recommended! I don't cry so much now but I am still sad and thinking of her constantly.
This forum has been so good for me. It has helped me deal better with the situation we find ourselves in.
Keep strong RobinH, for your Mum and yourself.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,783
0
Kent
Hello Robin

I also found your post very moving and can feel how worried you are about her being by herself for so many hours in the day.

Could you suggest your mum has a short holiday at a convalescent home. It is obvious she has lost all sense of time so this might work to get her the 24/7 care she seems to need.

I had a wonderful care package. I had 3 hours every day, 2 hours during the day and half an hour morning and evening for dressing and undressing.

It still meant I was alone with my husband for 21 hours every day. He had me to try to try to reassure him but those living alone are in a much more vulnerable position.

What a big worry for you.
 

RobinH

Registered User
Apr 9, 2012
264
0
London
Time to try some sort of residential care

Hi

We are now having the same conversation each time - mum's loneliness is worse than her dementia. Yesterday, through the tears, she let slip what she really wants - someone to move in with her. I would be the only candidate (one sibling has unhelpful spouse, the other has mental health problems). Being honest, it would be the end of my life as I know it, and I'd end up resenting her for doing that to me.

I want to start the process of getting her into some sort of residential home, at least as a try out.

She's a Housing Association tennant, and has very little savings.

Where do I start?

Robin
 

Noorza

Registered User
Jun 8, 2012
6,541
0
You can ask for an assessment to be done, I think I'd call Social Services Vulnerable Adults Section, I access them by calling my local city council and explain exactly what you have here. If she doesn't have the funds, she won't have to pay for her care.

I'd be giving them a ring in the morning and see what their advise is on making this happen for you and your poorly mum.
 

Helen33

Registered User
Jul 20, 2008
14,697
0
Your post was very moving and I felt for both you and your mum.

It's good that you recognise that you can't move in with your mum as your life is important too and I feel fairly sure that this would not solve the problems but change them into other problems..

Finding the right care home for your mum could be quite a job. One can be lonely in a crowded place so just being in a lounge with other people might not necessarily take away the feeling of being alone. It might be worth considering a care home where you feel it is more likely that your mum will have the opportunity to 'connect' with others.

I wish you well and will look forward to hearing how you get on with this part of your journey with your mum.

Love