A big shock today: i don't know what to do

What a horrible shock for you and your husband. Glad she was OK.

But I think you need to try hard to find a solution if possible which will not wreck your own family life, so that you and your husband and son can still go out to football matches, or just out for a walk or down to the shops spontaneously or whatever.

Using carers whenever your Mother is alone means abandoning any flexibility, no chance to ever all 3 of you go out together without it being planned 24 hrs in advance. (Unless it really is a late-afternoon only thing, I suppose, and you'd feel OK to go out in the morning). Quite apart from the expense.

For you to keep on looking after your Mother at home with you, you need to preserve your own family's quality of life at a bearable level.

So I'd start looking at technology: systems like someone mentioned above for a door alarm, or the systems with a recorded message saying "Mum, please don't go out without us" if she opens the door, etc. The GPS ideas sound great too.

Maybe I'm being heartless. We are living with my Mother to care for her, and at first (after my father's death) never both left the house without her, as the GP had said "Of course it would be dangerour for her not to have 24 hr care". But then after 6 weeks or so we became more relaxed, remembering that Father often went out for part or whole days and she was fine on her own. We now reckon we can leave her a few hours at a time, with her "lifeline" pendant in case of any fall (never yet used it), and we can plan a whole day out by booking a couple of half hour carer visits in the day. She's very lucky, only mildly affected and very stable on Aricept, only deteriorating slightly in the almost 2 years we've been here. Just no short term memory. Also at 94 is not a great walker: more dangerous is that she might start to cook and forget and burn things (which she could do just as well when we're in the garden or in another room of the house, as we don't sit with her all day). We have two smoke alarms.

Obviously everyone is different, and Mother has shown no signs of wandering off, so we are in a different boat. (Years ago it was thought that Mother had wandered off and got lost on a horrible wet night after getting a lift home from WI meeting while Father was out at another meeting: it turned out that she'd forgotten her key, gone to a neighbour's, left a note through the letterbox to say so, and Father had come in, trodden on the note, and it had stuck to his shoe so he didn't find it... !)

But you do need to weigh up the quality of life for all members of the family.

Good luck, Pam
 
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sussexsue

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Jun 10, 2009
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West Sussex
What a scare for you and some excellent advice.

After a very short time of coming to live with us we realised that we couldnt leave mum alone, although fortunately she isnt a wanderer. So for the past three years I have been a virtual prisoner and every escape has required a lot of planning. My daughters are great about coming to "nannysit" as they call it, so OH and I can get out sometimes, but family outings became impossible. For various reasons sitters havent worked as mum can become so agitated when I, or a family member, is not there that she has had a stress-induced seizure.

I havent any advice for you, but just empathy that the lack of freedom that comes with caring is one of the hardest things to deal with.
 

Dazmum

Registered User
Jul 10, 2011
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Horsham, West Sussex
Thank you everyone for your replies and your kindness, I'm sorry I didn't reply yesterday, I was treated to a spa day by my lovely husband, what good timing that was and how I needed a stress reducing back massage. The lady that did it wrote 'tight neck and shoulders' on the form... I can't think why?!

Anyway, I'm back to practicalities today and have put a call into our gp (mum's and mine) with an appointment today, and a call into Crossroads too.

Thanks for all your suggestion, we'll look into the alarms Simon, didn't know there were such things!

Pam, you are not being heartless, and your comment about finding a solution if possible which will not wreck our own family life is my main concern. I have my dad in a NH too and have to do things for him as well. I love my parents, but we didn't really anticipate any of this when we decided that they should come and live with us. I want the best of care for them, but seeing the look on my son's face when we got in on Saturday night, probably mirroring my own, made me think, right, HE comes first now.

You are right Sue, and I'm not going to become a virtual prisoner either. xxx
 

turbo

Registered User
Aug 1, 2007
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Hello Jennie, Have you tried ringing your local Alzheimer's Society or Age UK Branch. ?


Turbo
 

Beautymum

Registered User
Nov 21, 2011
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Hi Jennie - Joined the forum today, and i can kind of relate to you.
My mother and father in law sold the family farm last year and moved 2 miles round the corner to a old farm house which they have refurbed and is now beautiful. My mother in law (who has Alzheimers) is completely disorinantated about living there! She has in a way, become worse since moving house.
I am waiting for the day we get called to say she's been "wandering" which she does around the garden, but looks completly disorintated and confused.

I think you are doing the right thing with having her live with you, and still giving her a little independance, i also think, as hard as it may sound, try and forget about it and put it in the past and maybe, next footy match, take her with you, or take her shopping whilst your son and hub go play footy?!

xx
 

Dazmum

Registered User
Jul 10, 2011
10,322
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Horsham, West Sussex
Hi Beautymum, welcome to TP. Problem is that going to watch our team play is virtually the only thing we get to do away from home as a family, i.e the three of us and we need that time together, it's pure quality time.

I spend a couple of days a week with Mum, other than the weekend, Monday is the day we go shopping nor to see my Dad or just do something nice. I can't really give her any independence as such as she literally wouldn't know what to do! I think that's why I need to have a sitter, or some arrangement such as a day centre, if I can find one and get her to it somehow. That's for the short term anyway :(

Just called our local AZ society, very nice lady, but nothing in our area apart from the De-Cafes, no funding for things for mild moderate dementia sufferers.
 
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turbo

Registered User
Aug 1, 2007
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Hello Jennie, Have you managed to sort anything out for your mum.? I have been thinking about you.


Turbo
 

Tess810home

Registered User
Jan 11, 2011
157
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London
Help and support

Hi Jennie, so sorry for your shock today. It will not provide any comfort to you to know that this is very common, the sundowners syndrome causes some very strange and dangerous behaviour. The going home impulse is common also, not just after sundown but during daylight hours also.

I am fortunate in that I can be with mum all the time but it may help you to know that Social Services will supply an alarm free of charge which once sounded (ie when door opened) will immediately contact an emergency response team who will ring a nominated number (i.e. your mobile) and inform you that the alarm has been activated. They will also contact the emergency services for you if required.

Can I also suggest obtaining a bracelet for your mum stating her condition and who to contact in an emergency.

I used to live in fear of simply going to the bathroom and finding mum had left the house without my knowledge (I live on a very busy road). I understand completely the distress you are feeling, not only at the risk she suffered but at the discovery that she has moved on another stage of the illness.

Helplessly watching the progression of AD is surely the hardest thing for a carer but there is help in managing some of these risks. Contact your local social service offices GP and ask for assistance with the wandering problem. It's distressing, but not impossible to deal with. Once you know she is safe, your distress level will fall back down to 'normal' levels.

Good luck with obtaining appropriate risk managment tools to help you and your family cope....and...your husband's reaction was soooo right!
 

Tess810home

Registered User
Jan 11, 2011
157
0
London
Mild?

Hi Beautymum, welcome to TP. Problem is that going to watch our team play is virtually the only thing we get to do away from home as a family, i.e the three of us and we need that time together, it's pure quality time.

I spend a couple of days a week with Mum, other than the weekend, Monday is the day we go shopping nor to see my Dad or just do something nice. I can't really give her any independence as such as she literally wouldn't know what to do! I think that's why I need to have a sitter, or some arrangement such as a day centre, if I can find one and get her to it somehow. That's for the short term anyway :(

Just called our local AZ society, very nice lady, but nothing in our area apart from the De-Cafes, no funding for things for mild moderate dementia sufferers.

Just a note re above, I would not say that the wandering and inability to manage on her own is indicative of mild dementia, this sounds to me to be stage 5 or 6? I would ask for a re-assessment of your mum's needs in addition to a further assessment from a dementia specialist to show the powers that be exactly what your mums risks are.
 

grove

Registered User
Aug 24, 2010
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North Yorkshire
Hello Dazmum , Just "catching up " with your News & good that Cross Roads are (hopefully ) going to help you & your Mum :)

Positive T P Vibes that the G P is also able to Support & Help you all


Take Care

Love & Hugs Love Grove x
 

britcare4

Registered User
Jul 5, 2011
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So sorry to hear of your distressful experience. It is very difficult to make sure someone doesnt wander. Our neighbour has a 24/7 carer but even carers have to leave the house a few times a day. Only yesterday the carer was in the bathroom and our neighbour 'escaped' and came round to us. She thinks we are family and tells us off for leaving her alone.
The carer has tried locking her in , which sometimes worked, but she is 'cunning' enough to escape via the terrace door and fight her way through the wilderness that was once a garden. Trouble is she cant find her way back again and is wobbly on her feet. We are just waiting for her to fall.

Do you have a garden? Can you lock the garden gate? Our neighbour has only a broken gate, we keep asking her son to organise a solid one with a lock.
You and your husband are wonderful to do so much for your parents, but you have to lead a life as well. Good luck.
 

Dazmum

Registered User
Jul 10, 2011
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Horsham, West Sussex
Thank you Grove, Tess and Britcare. I went see our GP last night, and we have been referred to the local elderly mental health team, so maybe we can access some other services or at least be on the map and in the system. She was very sympathetic, but of course not a lot she can do. Crossroads can't help me out for two weeks, but they are sending paperwork, so I went into work today and asked that I could work at home on the days I have no cover over the next fortnight. Luckily my immediate boss is sympathetic, as his MIL also had dementia, but was not a wanderer, which is really my immediate problem. So, I'm here working, told mum I had lots to do (true!) and had been allowed to do it here, she's very pleased :) :( I think she will enjoy the company of the right Crossroads person once she gets used to the idea.

What everyone says is true, we do have a life to lead. We've looked after both my parents here, mum for nearly seven years, Dad for six, and it has gradually taken us over. We knew Dad was poorly, which is why the arrangement was made. We went away for a week last year, Dad undid all the arrangements I made and fell down two stairs onto the hard tiled floor on his head, while checking on my mum, and since then we have had two weekends away and that's it. I want to have some quality time away as a family while our son still wants to come with us, and to be able to go out spontaneously, which we haven't done for what feels like ever, and I think we need to think of a longer term solution quickly. I'm going to talk to the manager of Dad's NH to see what she thinks, because it would make sense for mum to be there too, it would cheer dad up (if not mum, because he does complain :() but she would have her own room to escape to, and it would encourage him to join in with the activities more if she was there. But, I am sure that she won't want to go, which is another issue completely and one I am not looking forward to deaing with at all. I hope I don't sound selfish, but having seen on TP what this can do to people I need to take action before it wears me down. I don't ever want to resent my mum, I just want her to be safe and happy. My doctor did offer to sign me off, as clearly I was in a bit of a state when I explained all this to her, but I'm not quite there yet and don't want to be.
 

Tess810home

Registered User
Jan 11, 2011
157
0
London
Thank you Grove, Tess and Britcare. I went see our GP last night, and we have been referred to the local elderly mental health team, so maybe we can access some other services or at least be on the map and in the system. She was very sympathetic, but of course not a lot she can do. Crossroads can't help me out for two weeks, but they are sending paperwork, so I went into work today and asked that I could work at home on the days I have no cover over the next fortnight. Luckily my immediate boss is sympathetic, as his MIL also had dementia, but was not a wanderer, which is really my immediate problem. So, I'm here working, told mum I had lots to do (true!) and had been allowed to do it here, she's very pleased :) :( I think she will enjoy the company of the right Crossroads person once she gets used to the idea.

What everyone says is true, we do have a life to lead. We've looked after both my parents here, mum for nearly seven years, Dad for six, and it has gradually taken us over. We knew Dad was poorly, which is why the arrangement was made. We went away for a week last year, Dad undid all the arrangements I made and fell down two stairs onto the hard tiled floor on his head, while checking on my mum, and since then we have had two weekends away and that's it. I want to have some quality time away as a family while our son still wants to come with us, and to be able to go out spontaneously, which we haven't done for what feels like ever, and I think we need to think of a longer term solution quickly. I'm going to talk to the manager of Dad's NH to see what she thinks, because it would make sense for mum to be there too, it would cheer dad up (if not mum, because he does complain :() but she would have her own room to escape to, and it would encourage him to join in with the activities more if she was there. But, I am sure that she won't want to go, which is another issue completely and one I am not looking forward to deaing with at all. I hope I don't sound selfish, but having seen on TP what this can do to people I need to take action before it wears me down. I don't ever want to resent my mum, I just want her to be safe and happy. My doctor did offer to sign me off, as clearly I was in a bit of a state when I explained all this to her, but I'm not quite there yet and don't want to be.

Jennie, you are overwhelmed at the moment. Unsurprisingly! It was only January 2011 that I gave up work to care for mum. Having worked constantly for 36 years, this was a huge adjustment for me but I truly could no longer give mum the care she needed as well as carry out my job to a satisfacory level. My life is now on hold. I would not advocate this for anyone, this is what worked for me however. I feel no resentment as the choice was mine. Not everyone is in the same position. I am lucky as I have no family of my own to worry about. I would however advise anyone to consider very carefully the long term situation before giving up work to become a carer. It's stressful and thankless and there are times when your self worth becomes very low indeed. Try to maintain your quality of life while dealing with your parents needs. It's important.

It sounds to me as though your are walking through this swamp of confusion steadily and are just as confused about the next steps as anyone. It's all a huge learning process and everyone's experiences are different. You need to know that you are doing OK. You are dealing with things you have not had any training and little support for and you are managing the situation well and maintaining a quality of life for your family - this is vital in order for your personal happiness which in turn gives you the strength which enables you to provide the support and care your parents need.

Wishing you all the best.
 

Dazmum

Registered User
Jul 10, 2011
10,322
0
Horsham, West Sussex
Thanks Tess, overwhelmed is the word! I'm just taking one day at a time, and being able to work at home is a big relief. My immediate boss is talking to the nex one up this afternoon, and I hope he'll be ok with it, if not then I may need to go down the 'sick' route which wouldn't be right, I'm not sick!

It must be hard for you being that only carer, do you manage to have time for yourself? I quite like my job, but it's the people and the camaraderie that I really enjoy, work with a whole range of age groups and we have a good laugh, and a gossip!
 

Beautymum

Registered User
Nov 21, 2011
12
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I wish you all the best, I dont know how you guys can be primary carers of an alzheimers person... My FIL is primary carer of MIL and I just cant get over how calm he is about it all, considering the "paddies", angry moments, teary moments shes having at the moment.

Knowing now that you have your routine with your mum ... its proberly not a good idea to change that knowing now shes confused and wandering, it'd proberly make her more confused!

Maybe, lock all the doors, turn off the gas (!) whilst your out, so then you'll know that she'll still be there when you get back, but still be safe until you get help in for you all

x
 

Dazmum

Registered User
Jul 10, 2011
10,322
0
Horsham, West Sussex
A quickish update, I'm feeling quite low today about everything and a bit sorry for myself and my mum. Dad (without dementia) not very well, probably due to a change in medication which the nh are dealing with, but they phoned to tell me about it yesterday, and used the words 'not responding' when they tried to wake him up, which really scared me. He was ok, luckily. Anyhow, the doctor is revisiting his medication today so fingers crossed on that one.

I've managed quite a lot since Mum's wandering episode. I have Crossroads coming to do an assessment on Friday and a chat with the manager at Dad's care home then, to discuss a short/ medium term soultion should we need it. My husband thinks we do, and in my head, so do I. My heart says something else. We also have an assessment by the elderly mental health tem on Monday. I'm working at home this week,, mum going to her brother's again Thursday so I can go into work. Mum has been ok during the day, but come the sundowning and we have problems, not every day, but quite distressing. Sunday she was very quiet, I was sitting in her room and we were watching Strictly and she suddenly said very crossly, but a bit tearfully, I think I'll go home tomorrow, I haven't seen my mum and dad for ages and I'm going home.' I was a bit taken aback at the stroppy attitude as she's not like that normally, so I just said (and thank you TP!), 'ok we'll go tomorrow', and it worked. All forgotten the next day. This morning at about 5 a.m she was standing at our bedroom door, I am a light sleeper, and had been awake anyway, worrying, so got up and took her back to bed. She wondered if she was the only one awake....... My husband was around yesterday and without mme knowing,monitored all the things I dis for my mum, from setting up her shower to switching her tv over and sorting out the volume. I was quite staggered at how much I'd done.

Today she's sat quietly as usual, watching a dvd of some music. I'm doing all the right things so why am I so low? I'm thinking that whatever I decide next, it's not going to make me happy, whether she stays with us or moves to be with dad, both she and I are going to be seriously upset. I suppose that if she does need to go to the care home, at least she will be with dad, which is more than most can hope for. This time last year was really upset because they were being split up after 60 years of marriage, and now I'm upset because they might be together again, but not the way they want to be. No pleasing me is there? A lot depends on the outcome of the next few days. I'd just like someone else to deal with it while I hibernate for a week or so, and then just tell me what's going to happen. Is that cowardly?
 

turbo

Registered User
Aug 1, 2007
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I'd just like someone else to deal with it while I hibernate for a week or so, and then just tell me what's going to happen. Is that cowardly?

Hello Jennie, No you're not in the least bit cowardly. I think the feeling of wanting to run away or hibernate is very common.
Perhaps it is because you have coped so well with your mum without outside help and accepting outside help makes you realise how things are changing.
It's not easy because you also have your dad to worry about as well.
Thinking about you.

turbo