Advice and any tips on keeping my mum interested and occupied

[UnforgettableMe]

Hi all,

Firstly this is my first post and apologies if it rambles! I have read a fair few from both people asking advice and people offering support and hats off to all the kindness and knowledge shown on this forum. It is much appreciated, especially from a relative newbie...

Forgive me if this isn't a relevant question but I have managed to glean a lot of information surrounding my mum's condition (Mixed Alzheimers and Vascular Dementia) and I am sure I will have more in the future.

My mum (80) has lots of classical signs (memory loss, confusion, inability to manage her emotions very well) but she is also only at the stage where she can still live independently (dad is full time caring and thankfully robust). Because she can no longer drive or do many of the things that she used to (charity work, etc), she is bored, restless, and spends lots of time brooding over what's happened to her, what she hasn't got, what she can't do. She is awake and gets up at an ungodly hour (like 4am) because she tends to sleep from post 9pm, and has lots of time. She has said she feels diminished by her brain which is entirely understandable but most of the time she is vehement that there is nothing wrong with her and it's all dad's fault for ruining her life.

We take her out often, even if it is just to the local town, she has amazing friends who are all so understanding and active in rallying around and taking her to give dad a break.

We buy her little things like a bunch of flowers so she has something to find a vase for and organise etc and there is always her garden where dad helps her do anything she wants doing subject to the weather. We also got her a cat who thankfully adores her and just wants to sit next to her! But she still has a lot of time on her hands (this morning she was dressed and ready with hat and coat on for a 12 o clock pick up at 6am!).

She also I know does not feel useful. She used to get all her self esteem from doing things for people (she was a Samaritan for 30 years) and now I know feels a bit useless.

Sorry rambling. Does anyone have any insights into something/s/activities/distractions that she can do in the house that will keep her occupied and feeling useful? I know there are 'knitting' etc but she is too old to learn and as she refuses to join any groups because 'there is nothing wrong with her' and now very socially anxious, it is really hard on my dad having to 'entertain her' and half the time she 'hates him'.

Any thoughts appreciated even if it is 'this tends to be the case...'.

Best Fiona x

 

[marionq]

If you could sell the groups as places where people need her input and experience. If she is a singer she may be a star at the singing for the brain type group. I was moved to tears by the beautiful singing of one lady at our group. Allotment groups, film groups, health walks all might be suitable. I found that because I had taken my husband to so many of these in the early stages that he then accepted the daycentre almost as an extension of the groups run by Alzheimers Scotland.

Going on from that he was reasonably accepting of respite. It is so important to start mixing with others as early as possible. Are you in a town where there might be tea dances or coffee mornings?

Even more important is that your Dad has time to do something he likes.

 

[UnforgettableMe]

If you could sell the groups as places where people need her input and experience. If she is a singer she may be a star at the singing for the brain type group. I was moved to tears by the beautiful singing of one lady at our group. Allotment groups, film groups, health walks all might be suitable. I found that because I had taken my husband to so many of these in the early stages that he then accepted the daycentre almost as an extension of the groups run by Alzheimers Scotland.

Going on from that he was reasonably accepting of respite. It is so important to start mixing with others as early as possible. Are you in a town where there might be tea dances or coffee mornings?

Even more important is that your Dad has time to do something he likes.

Thank you Marion. Very helpful especially advice on getting her used to these places sooner rather than later. We have tried to get her on the local memory walks but she has so far refused to go (so dad carried on an went!). I have suggested she become a befriender (akin to just being a friend) at the local WiSE (Wetherby in Support of the Elderly) cafe in the village (she makes the best shortbread in Scotland too also contribute). All flatly refused with the attitude that she hasn't anything wrong with her.

That is why I'm also trying to find (as a temporary solution at any rate) something to do when she is in the house that relieves dad a little.

But I am definitely going to make a bigger effort at breaking this barrier.

 

[karaokePete]

Hello @UnforgettableMe, welcome to TP, I hope you find this to be a friendly and supportive place.

From experience with my wife I would advise never to underestimate the effects of apathy, depression and anxiety in a person with dementia. These conditions are so common in people with dementia that there is an AS Factsheet about them and you can read it by following this link https://www.alzheimers.org.uk/sites...ownloads/factsheet_depression_and_anxiety.pdf

 

[Tuesdays-Child]

Hi all,


My mum (80) has lots of classical signs (memory loss, confusion, inability to manage her emotions very well) but she is also only at the stage where she can still live independently (dad is full time caring and thankfully robust). Because she can no longer drive or do many of the things that she used to (charity work, etc), she is bored, restless, and spends lots of time brooding over what's happened to her, what she hasn't got, what she can't do. [...] She has said she feels diminished by her brain which is entirely understandable but most of the time she is vehement that there is nothing wrong with her and it's all dad's fault for ruining her life.

[..] she refuses to join any groups because 'there is nothing wrong with her' and now very socially anxious, it is really hard on my dad having to 'entertain her' and half the time she 'hates him'.

Any thoughts appreciated even if it is 'this tends to be the case...'.

Best Fiona x

Hi Fiona - all the things I’ve highlighted above really ring true for me, with my grandma also being very bored and lonely; unable to care for herself but still independent in other ways, whilst also being adamant there’s nothing wrong with her. As for things to do, I’d definitely recommend @marionq ’s idea of reframing daycare opportunities to allow her to have a purpose. If Grandma wasn’t so stubborn, we’d probably do this with her!

 

[elvismad]

If you could sell the groups as places where people need her input and experience. If she is a singer she may be a star at the singing for the brain type group. I was moved to tears by the beautiful singing of one lady at our group. Allotment groups, film groups, health walks all might be suitable. I found that because I had taken my husband to so many of these in the early stages that he then accepted the daycentre almost as an extension of the groups run by Alzheimers Scotland.

Going on from that he was reasonably accepting of respite. It is so important to start mixing with others as early as possible. Are you in a town where there might be tea dances or coffee mornings?

Even more important is that your Dad has time to do something he likes.

My mum accepts the SFTB group and a singing group at a local hospice because she 'is there to brighten others peoples lives' . Mum loves to sing and her carer that accompanies her has sent me video clips of mum performing solo with great gusto!

 

[Amy in the US]

I have read stories on TP, and heard similar ones in my local support group, of selling the day care/respite care/care home/day centre to the PWD (person with dementia) by telling them they are a volunteer or helper there, and perhaps even providing (appropriate and possible) tasks for them to accomplish. At my mother's care home they often have a resident sitting and "helping" in the office. Anything that makes the person feel useful and included is helpful.

Others have gotten over the adjustment period by telling their PWD that it is a free service, or a trial scheme that they need volunteers to test out, or that they have paid for a certain amount of time so they might as well get their money's worth, or that they are helping a struggling person/service desperately in need of financial help, or whatever might appeal.

Some people alert the staff in advance to a "reluctant" arrival and the staff help by greeting the PWD at the car/bus/van or the front door, and making them feel welcome.

If you can tailor the approach to something with personal appeal, something that perhaps plays on their personality and/or personal history or interests, and add an emotional hook, sometimes that can work. So as she was a Samaritan for many years, perhaps you could say, you know, they really need help, they need volunteers who are skilled and as you have so much experience, they have asked if you could possibly please help them a bit?

Copious use of words like please, thank you, and help, can be useful. My mother's neurologist says we are primed to respond to those words and it doesn't hurt to try.

I also hate to say it, but so often, if you ask dementia, you will wait forever for agreement. In addition to not contradicting, arguing, saying no, trying to use logic or reason, or discussing anything, I wouldn't mention plans in advance and wouldn't ask her if she wants to do something, I'd just present it (pleasantly) as a fait accompli and do it. I know that sounds terrible (like you are leaving her out of the discussion and possibly lying or being untruthful) but the dementia damaged brain just doesn't work the same way any longer and it's often easier and less stressful for everyone to avoid setting yourself up for distress, refusal, or conflict. For example, my mother will say "NO" to any question asked of her in this way: would you like/do you want...to go to lunch, to have a bath, to get dressed, to listen to music, to go to an activity, to have a biscuit. But if she is told, it's time to go, she will go. Or if I say, let's go over here and....she will almost always go along. Sometimes it's how something is presented. I know it's an odd concept but it may be worth considering.

Also, a belated welcome to Talking Point and best wishes to you and your family!

 

[Canadian Joanne]

I am one of those people who sold the day care centre as needing volunteers to help. That worked for some time.

 

[RedLou]

My OH runs pottery workshops for people with dementia of all ages. He often has someone present who believes they are his 'assistant' and invaluable 'helper.'

 

[DaisyK4]

I have tried everything to get my mum a social life, to no avail. She has carers for an hour each morning but rarely remembers they have visited. She spends hours doing a jigsaw (My lovely husband spends ages putting the jigsaw right!)
Mum also sleeps a lot - over 12 hours a night. She often falls asleep after breakfast and at other times through the day
Mum is 87. Is the excessive sleeping normal? Dementia or just old age?

 

[lemonjuice]

This is a really challenging time, when they are actually aare of tehir shortcomings, yet still insist there's nothing wrong with them.

For me I just centred on what was important to my mother. For her that was doing housework. Activities which preserved her sense of feeling useful. So hoovering, dusting, window cleaning, washing up, folding washing etc. She was no longer capable of cooking or using anything with buttons, so no cooking /baking, though she could help me prepare. And no ironing of course or anything which involved electricity / danger, unsupervised. She 'mended' pockets on trousers for my husband, she had always made her own clothes, though poorly done we accepted that.

Later on when her short-tem memory was so poor we'd she'd often wash/dry the same set of crockery/cutlery several times in an hour. She would neatly fold washing . I'd take it away, mess it up and later 'find it' and she would fold it again. I organised meals twice a week where she could have company and be fed and gave me some respite. We took her to visit gardens, concerts anything to relieve the boredom.

 

[UnforgettableMe]

I have read stories on TP, and heard similar ones in my local support group, of selling the day care/respite care/care home/day centre to the PWD (person with dementia) by telling them they are a volunteer or helper there, and perhaps even providing (appropriate and possible) tasks for them to accomplish. At my mother's care home they often have a resident sitting and "helping" in the office. Anything that makes the person feel useful and included is helpful.

Others have gotten over the adjustment period by telling their PWD that it is a free service, or a trial scheme that they need volunteers to test out, or that they have paid for a certain amount of time so they might as well get their money's worth, or that they are helping a struggling person/service desperately in need of financial help, or whatever might appeal.

Some people alert the staff in advance to a "reluctant" arrival and the staff help by greeting the PWD at the car/bus/van or the front door, and making them feel welcome.

If you can tailor the approach to something with personal appeal, something that perhaps plays on their personality and/or personal history or interests, and add an emotional hook, sometimes that can work. So as she was a Samaritan for many years, perhaps you could say, you know, they really need help, they need volunteers who are skilled and as you have so much experience, they have asked if you could possibly please help them a bit?

Copious use of words like please, thank you, and help, can be useful. My mother's neurologist says we are primed to respond to those words and it doesn't hurt to try.

I also hate to say it, but so often, if you ask dementia, you will wait forever for agreement. In addition to not contradicting, arguing, saying no, trying to use logic or reason, or discussing anything, I wouldn't mention plans in advance and wouldn't ask her if she wants to do something, I'd just present it (pleasantly) as a fait accompli and do it. I know that sounds terrible (like you are leaving her out of the discussion and possibly lying or being untruthful) but the dementia damaged brain just doesn't work the same way any longer and it's often easier and less stressful for everyone to avoid setting yourself up for distress, refusal, or conflict. For example, my mother will say "NO" to any question asked of her in this way: would you like/do you want...to go to lunch, to have a bath, to get dressed, to listen to music, to go to an activity, to have a biscuit. But if she is told, it's time to go, she will go. Or if I say, let's go over here and....she will almost always go along. Sometimes it's how something is presented. I know it's an odd concept but it may be worth considering.

Also, a belated welcome to Talking Point and best wishes to you and your family!

Amy, most helpful thank you. Best to you and yours x

 

[DaisyK4]

This is a really challenging time, when they are actually aare of tehir shortcomings, yet still insist there's nothing wrong with them.

For me I just centred on what was important to my mother. For her that was doing housework. Activities which preserved her sense of feeling useful. So hoovering, dusting, window cleaning, washing up, folding washing etc. She was no longer capable of cooking or using anything with buttons, so no cooking /baking, though she could help me prepare. And no ironing of course or anything which involved electricity / danger, unsupervised. She 'mended' pockets on trousers for my husband, she had always made her own clothes, though poorly done we accepted that.

Later on when her short-tem memory was so poor we'd she'd often wash/dry the same set of crockery/cutlery several times in an hour. She would neatly fold washing . I'd take it away, mess it up and later 'find it' and she would fold it again. I organised meals twice a week where she could have company and be fed and gave me some respite. We took her to visit gardens, concerts anything to relieve the boredom.

 

[DaisyK4]

Mum hand washes every day. Dishwashing, on the other hand, has gone out the window. I fill a bowl with hot water & detergent every day & soak used cultlery & crockery.