Can't get mum to stay at home

[sandra21155]

I got phone call at 9.30 am from a garden centre at least a good 20 -25 minute walk from my mum's house, to say that mum was unwell. Picked her up and took her home.
She would walk to supermarket which is about 15 minutes away or get a bus to the town and has no problem doing this. But she will go out at least 5, 6 or even 7 times a day. will hardly be able to stand by the end of day. Her social worker describes her as 'driven'. She will not go to any of the day centres.
Mum has just been on aricept 5mg for two nights now. She started to be sick and looked absolutely awful. Mental Health nurse had arranged to call this morning to see how she was getting on, checked her heart and pulse and advised us to try to keep taking the aricept to at least Sunday.

The problem today is that even in between the bouts of sickness - about every 30 minutes she is still trying to go out. she is unable to stay still even when she is so sick. And on top of the sickness, we have blue skies and full sun -26 degree temperatures so I'm scared she will dehydrate and collapse somewhere. So I have been with her all day. It was 19 degrees when I picked her up this morning and she had walked for half an hour then.
As the day progressed she was getting cross with me because I refuse to let her go out. Eventually threatened to phone the GP.
Has anyone got this 'driven' problem. (think 'driven' may be one of our local words)

 

[jaymor]

I suppose I could say my husband is driven. He has worked very hard all his life, run his own business for many, many years so has always been busy. When not working a 16 hour day he did all repairs, including an extension and was never happy unless doing something. Now he can do practically nothing other than make a cup of tea and he cannot sit still. So very difficult to keep him busy all day. We go out a lot but he now worries about me remembering where the car is parked or if I know my way home. He goes to day care now for three days a week and they write down what he has done during the day so we can talk about it when he gets home. He will look at what they have written and say it could not have taken him all day to do so little. How I managed to keep him occupied before daycare I don't know, it has all become a blur. Two couples we have met along our journey, with both husbands having dementia say their husbands just want to sit around all day and they have trouble motivating them. Oh to just swap one of them for my husband for just a week of rest.
Jay

 

[sandra21155]

This problem has got worst, and I suppose its worst since she stopped doing anything about the house. She has basically stopped cleaning, cooking, and gardening. She never read books but loved to cross stitch and knit but this has all gone. She still buys the bedding plants but unless I know she has them , they will be left somewhere to wilt and die. I am sure her day is pretty boring. But only tried the day centre for 3 or 4 days, she then refused to go. I go and take her out for 2 -3 hours everyday. But will say she has never seen a soul all day .
She does not like the idea of anyone knowing that she needs help. So her thinking over the last few years is that if she doesn't ask me to do anything or take her anywhere then she isn't dependant on me. I am about to give up my part time job so I can at least have some time for myself and my family. But when I told her this, she said that if I did I was never to come back again - she didn't need me.
Thanks for the moan. My husband doesn't need to know now that I've had a bad day too.

 

[lupo]

Hi Sandra, my Mum was exactly the same. Couldnt keep her in. SW described her as like a caged animal. She would set off for church , even when shut, come home, set off again, up to 6 or 7 times, till she would drop from exhaustion. She too couldnt tolerate aricept, now on ebixa which we found better for her.

 

[ITBookworm]

She does not like the idea of anyone knowing that she needs help. So her thinking over the last few years is that if she doesn't ask me to do anything or take her anywhere then she isn't dependant on me.

Hi Sandra, Sorry I can't help with Mum wanting to keep going out. I just wanted to say that I liked your statement above. That describes FIL's thinking exactly!!! If he asks the neighbours for a lift or help that is fine but if we offer exactly the same thing - instant refusal

Hope you are able to find some way of helping mum.

 

[sandra21155]

Thanks for the support. Was beginning to believe it was just me.
I have managed to get to touch with social worker to try the day centres again. I am starting to dread going to mum every afternoon. Struggling to find things to interest her. At one time we would have gone for a walk on the beach, or the local park but she will say its too far or too cold but as soon as my back is turned she is away at a gallop across town or up walking to the supermarket, and she will do this in all weathers. I hope she won't be feeling so sick tomorrow.

 

[Butter]

This is very familiar ---- my husband is driven. It is a good word. I don't think it's local. My husband will rush out to work from 8.30am to 10 pm. And then spend a night in and out of bed with the light on and off ......

 

[sandra21155]

I have been with mum most of the time since Friday. On Saturday she was feeling better and she agreed to come to my home about 3.30pm. Had a 'salad tea' with us and was able to eat more that me. Sunday she went to church and always comes to me for Sunday dinner. Today I picked her up at 10 o'clock. We did the pension, then went across town because I knew if I did'nt take her, she would try to go herself. The temperature at 10 was 21 degrees, and it really was too hot for her to walk about. Oh yes, discovered when we were in town that she hadn't used any of her inhalers for the COPD. Had some lunch and left her back home at 12.30 pm with the warning for her to stay indoors and my husband would pick her up again at 5.00pm to come for her dinner. SHE GOT THE 1.05 pm BUS ACROSS TO THE TOWN AGAIN. I am exhausted and she just keeps going. You will love this. Mum is still with me, and has just announced that she would really love to go over to Scotland for a wee break. I hav'nt answered her lol.

S

 

[Carolynlott]

Hi Sandra,
My Mum was like this – it seemed she just didn’t want to be alone in the house. So she would head off very early in the morning to her sister’s house down the road, but her sister couldn’t cope with her for long and would send her back home when she had had enough – and then after an hour or so Mum would head down again, even though her sister (also in early stage AD) had been quite ‘off’ with her. When Mum started having carers three times a day they would often find her out and have to ring me and her sister to find out where she was. Then she started getting lost, and her neighbour told me she would go out and leave her front door wide open – which was really the end of her being able to live at home.
C

 

[sandra21155]

Thanks carolynlott, You are right - she does not want to be alone in the house. I have tried it every way, but nothing works. If she would only come to me during the day it would help. She will only stay for about 30 - 40 minutes and then wants to go again. I am fed up wandering the town with her, so I just let her go by herself now.
The bus men all know her now, so do the staff in m&S food hall and tescos. She is this wee frail old woman who looks as if she could collapse at any minute. I have threatened to tell the doctor again. It's like ' wait to your father gets home'. If it wasn't so hot I wouldn't be so worried.

 

[sandra21155]

Hi Carolynlott, have jusr read your profile, I am n a similiar boat, only my dad died 10 years ago. I'm only child and no one visits my mum. she will look to be taken to visit people but they never return the visit. I know they all find mum too much to deal with. so she is very lonely.

 

[Chemmy]

My mum was a wanderer too - she always had to be out and about. It was like a compulsion. I lived a distance away and I used to get phone calls - from the daycentre where she used to turn up on days she wasn't supposed to be there, from an old school mate who was worried about her wandering around the town centre at dusk etc etc. But there was nothing I could do as she was just about managing on her own.

It all came to a head one Christmas. We deferred our family Christmas until 27 Dec (voted the 'best ever' by my children ) and I went down to stay with Mum. I arrived late morning on Christmas Eve and of course she wasn't in. Three hours later, she turned up, distressed, cold, soaking wet and I remember saying "Oh Mum, we can't go on like this" and she agreed.

Christmas Day was a nightmare . She was off 'to catch a bus into town' and no amount of explanation from me would placate her. And the last thing I wanted was for her to turn up and interrupt another family's Christmas dinner.

So we got in my car and I drove..and drove...and drove. Nothing open, nowhere to go.
She was happy enough doing that - it was the going she liked, not the getting there, if that makes sense.

That, combined with the realisation that she had no idea what to do with a tin of soup and was living on stale scones and jam, was the tipping point for me to phone the CH I'd already picked out. I phoned on Boxing Day and she had the first available bed in early February. Simple as that.

The wandering's not such an issue when the weather's good, but I shudder to think how she would have got on during those couple of icy winters a year or two ago.

 

[sandra21155]

Chemmy, - 'it was the going she liked, not the getting there,' so describes mummy.
Its always - 'I want to go' . If I said I was going the beach to walk the dogs, she would want to go too. I have two dachshunds that don't need 'big walks'. But 3 minutes on the beach to the poor wee dogs is like taking an ice lolly from a child after 3 licks. So I dug my heels in and I now refuse to take her on the walks. Thanks for the support.

 

[Nebiroth]

I think you will find that "driven" is simply another way of describing a compulsion which usually relates to some sort of repetative action. The person who is "driven" may feel they must do something - they may not even want or like doing whatever it is, but the feeling that it must be done will get stronger and stronger until the pressure is relieved by enacting the compulsion.

This seems to describe your mum who is repeatedly going on her outings despite the physical and mental discomfort involved, presumably because the discomfort of not doing it is worse.

Compulsions can be very hard to break and almost impossible when the cause is organic damage to the brain from dementia. Most compulsives have a psychological problem which is amenable to treatment of various sorts.

As to the Aricept, sadly, nausea and sickness are amongst the known and more common side-effects.

However, if your mum is actually vomitting or feeling very sick frequently or with little relief then this merits re-assessment. Usually these side-effects settle down after a while as the body builds a tolerance (this is why most people start on the lower 5mg dose for a month before going to 10mg - to minimise the side-effects and to allow the patient to build a tolerance).

If the sickness is causing real distress then it may be possible for her doctor to prescribe a short cause of anti-nausea drugs. These will alleviate the sickness whilst allowing mum to build up a tolerance.

If the vomitting is severe or persistent and shows no sign of improving, then it may be a sign that the drug is unsuitable in which case one of the alternatives might be tried.

Of course, the hot weather will not help.

In any case, I think it is worth getting her GP's advice. Nausea and sickness really don't just have to be "put up with". There are effective ways to relieve it.

 

[sandra21155]

Nebiroth, thanks for you reply. You explained things so well to me. I just need to calm down when she has a bad day. Mum is still on the Aricept and has stopped being sick. Its very easy to blame the tablets, but it could have been the heat. I did get prescription for her from the GP but it has all settled now. Thanks again. S.