Mother doesn't want to live alone.

shark2

Registered User
Aug 22, 2012
136
n ireland
Hi everybody,
I'm pretty new to this website, but just looking for some advice.
mum 73 has been diagnosed with alzheimers - mild at the moment. my dad died 20 years ago and she has alone alone for 18 of those years. I am an only child - married with 2 children.
Just recently my mother has been frightened to stay alone. She has become paranoid - closing the blinds in case people look in, won't let her cat out in case people take her. We got a burglar alarm installed which quite honestly was more trouble than it was worth :rolleyes: Thinks people might come in and syphon of her oil etc. You get the picture. I stay 1 night with her and my 2 boys stay a night each. The other nights shes either at our house for tea or we are at hers until 9 or 10. She keeps saying how long it is on your own, but to be perfectly frank , shes really not on her own very much. I work part time and take her out every afternoon as well.
Now she wants to come sleep at our house. we only have 3 bedrooms so we have discussed getting garage converted. She , however would not like to sleep downstairs, so would like my 17 year old to sleep there and she could have his room etc. He doesn't really want this:(
I love my mother, but I could not live with her. I also feel I have no life of my own. Now, on the odd occasion when I go out with friends she tells me I never take her out :(:( Taking her out every day doesn't count apparently. :confused::confused:

Sorry for this turning into a ramble, but I'm very stressed at the minute - don't know what to do and am scared of what is ahead:(:(

Anybody got any advice?
 

ggma

Registered User
Feb 18, 2012
1,130
North Staffordshire
hi shark, every stage of Az brings its difficulties. So sorry to read how stressed you are getting.

I am sure others will be along with some advice, you have a very difficult juggling act, you have to give your time to all your family members not just your Mum. You not only seem very caring and giving a lot to your Mum but you are also trying to work.

It is not unusual for people with dementia to forget that they have just seen someone, so it can become a constant complaint, that they are alone, and it must seem so to them when they have no memory about what has happened that day.

One option to consider is sheltered housing where you Mum could choose when she wants to socialise with others rather than be by herself, this might be a better solution than moving in with you. You could also consider whether she would go to a day time club or service for people with dementia to give you some space.
 

Margaret W

Registered User
Apr 28, 2007
3,725
North Derbyshire
Hi Shark2,

I don't really know what to say. If mum's AD is really mild then you could say there is no reason why she shouldn't stay in her own home, and on her own. After all, she has done so for 18 years. I wonder what has changed to make her so scared? Would extra locks and a panic alarm help, or a connection to a local service that takes calls from worried folk and alerts the family?

If, as you say, you don't want to live with your mum, then don't. There really doesn't seem to be any reason for her to come to sleep with you. If she manages on the 4 nights a week that she is left alone, then she can manage on 5 nights and 6 and 7. Your 17-year old son is a star for helping out, but it seems to me that it really isn't necessary.

Would she be happier in sheltered accommodation? Where there is a warden on site to help out in emergencies.

I suggest you cut down on the number of nights that someone stays with her. It will be difficult to say the least.

And I would certainly not convert your garage unless it is what you want to do.

I can fully understand what a dilemma this is for you, but don't make major changes to your lifestyle if you are under pressure. It won't work for either of you.

Love

Margaret
 

FifiMo

Registered User
Feb 10, 2010
4,710
Wiltshire
Hiya Shark,

A couple of things which I noticed from your post were - mum has mild dementia at the moment and you are already stressed with trying to keep all the plates spinning at once. My advice to you would be to consider all the short term and long term pro's and con's associated with your mum moving in to live with you. Any decision you make has to recognise that the situation that you will start with will not be the one that you will continue to have. As your mum deteriorates then how would you as a family then cope if she is in your house? Are there any limitations at your house that could cause problems - like stairs if her mobility gets worse, access to toilets, do you have a spare room for other family members to be able to use if things get progressively worse? Maybe you also need to get your children to write down their pros and cons as well.

As an outsider looking in to your situation, you are already with your mum for the majority of the day and the only time that seems to be in question is where does she sleep. Aside therefore from giving her peace of mind during the night perhaps, there is not likely to be that much of a change if she moved in with you. That is, apart from the added stress on you as a family unit who at present can at least go home and get some level of respite from having to carry out the carer role.

I agree that a better solution all round might be to explore sheltered housing or even very sheltered housing, where she would have a warden around to provide the support and would have lots of opportunities to have company as and when she wanted it.

I would also not rule out whether a residential (as opposed to a nursing) care home might be suitable too. In residential homes the people are often more mobile and just need a safe and secure environment. They tend to be more active kind of places too often with lots of things to do - including doing the things that she used to do when at home. My mother went into a nursing home later in her dementia journey but she absolutely loved the place. Our biggest regret is that we didn't push for her to go into a residential home years ago when she would have had so much benefit from it, rather than sitting for years in her own home on her own.

Just my views based on my experience,

Fiona
 

Owly

Registered User
Jun 6, 2011
538
As her dementia worsens, she will become your full-time occupation if she is in your house and that could put huge stress on your whole family who will have nowhere to go to get away. It is much harder to get social services interested in your problems if you are right there caring for her.

As you say you couldn't have her living with you, the obvious solution is to have her move to residential care, with shared lounge and dining area perhaps so she can always go and look for company. The snag is that by making family so available to her, she has practically inserted herself thoroughly into your family unit and you will have to backtrack from that somehow so that she comes to accept that some of her "company" is going to come from people who start off as strangers, but will hopefully become her friends. Making friends will be much easier in early than in later dementia.

I wonder how much of her fright at being alone at night is really fright, or whether she's discovered that the more "frightened" she is, the more time family spend with her. There needs to be a boundary beyond which you cannot go for her. Moving her into your house seems to be that boundary.

Sheltered housing has pull-cords in all rooms that residents can pull if they feel threatened. But she might not bother too often if the visit she gets is from the Night Warden.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
paranoid

Hi sharke 2
I totally empathy for you in the situation/ stage you are in with your mother AZ .
I can only say that from experience with my mother when mum was at your mother stag in her AZ its heartbreak with so many Mix emotions of finding time wanting to be with your own family finding time with your mother.


Those symptoms your mother is having is part of the disease feeling frighten, paranoid is 2 of many symptoms of the disease.

It is harsh to say, but like others have said if your mother does move in it will take over your whole life, your whole family life will never be the same as it use to be before your mother never had the disease.

Even when my mum moved in to live with me, she would wake up feeling scared of being on her own in bedroom. I ended up making front room her bedroom. So many a nights I was woken up during the night with mum wondering in out of my daughter’s bedroom, Me arguing with mum to get back to bed.

Mum temper was made worse by challenging her in an argument, best way around it was just to guide mum back into her room put TV on for her, at one point Mum even wanted to sleep in my bed!

I never fully understood what was happening to mum when mum wanted to live with me. I had not found Talking point at that stage.


My mother was just like your mother wanting to go out every day. She would tell me soon as we got in “what are we doing tomorrow”

discussed getting garage converted
You could do that, but it won’t stop the symptoms of your mother clinging to you being scared, parodied, so you would need a good care packet from Social service as in day care for your mother so you can have a rest time out for yourself. Respite for you, your family to have time out together.

Other options like other have said about sheltered housing. But go for one that is specially design for people with a dementia .





I love my mother, but I could not live with her. I also feel I have no life of my own. Now, on the odd occasion when I go out with friends she tells me I never take her out Taking her out every day doesn't count apparently.
Now that also sounds like my mother, as the disease progresses that Jealousy steaming from insecurity, fear will only be magnify 100 percent more.

When I use to go out to be with friends, one of my daughters use to keep an eye on my mum.
My daughters and I lean to not give mum a time when I us going to be back.

Because if I was not back on time, mums Anxiety levels would rock sky high, my daughters could not settle mum down.


what ever decision you make am sure it be the right one for you all:)
 
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Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
I agree that assisted living or general residental care is probably the best solution and Owly's observation that, little by little, she's inserting herself into your lives is very shrewd. You need to establish some boundaries now, and as the others have said, back off, so that she can possibly see for herself that a move would be in her best interests.

It takes a lot of courage to come on to here and state that you don't want her to live with you and i commend you for your honesty.

I reached the same conclusion - I knew without even asking them that it would have torn my family apart.
 
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Delphie

Registered User
Dec 14, 2011
1,269
I agree with much of what's been said already. It's a tough situation to deal with but has the potential to get much more difficult if mum moves in.

For example, my mum used to adore my sons. Then, as the Alzheimer's progressed, she started to hate them for all kinds of imagined reasons so they began to receive the kind of treatment that had been reserved for me until then - endless accusations and lots of free-floating anger. Now, she doesn't really know who they are most of the time, but still seems to hate them and any contact with them is followed by days, or sometimes weeks, of furious rants about 'those boys' and 'those people' as she goes through all kinds of false memories of what they've done to her. Even when they were abroad for the summer they apparently managed frequent trips to the UK to play nasty tricks on her! There's no reasoning with dementia, though, and the only thing to do is give it time. Unfortunately, the stage my mum's at means that when one set of accusations and paranoias leave, they only make way for the next lot.

Obviously people's Alzheimer's journeys can be massively different and your mum might never behave like mine, but the way my mum is isn't completely unusual and I can't begin to think of how I'd cope with it if we were all under the same roof.
 

Bodensee

Account Closed
Mar 30, 2012
406
Oh dear your poor mum, very difficult situation for you both, I would talk to her mental health team for older adults, they should be able to give you advice about this. If your mother wants to move then they can help her with this, although it sounds like she only wants to live with you. You might also want to discuss with the mental health team what trials they are aware for AD in your vicinity for people like your mum who are in the early stages and relatively young to have this disease.
 

Witzend

Registered User
Aug 29, 2007
4,291
SW London
I know everyone is different, but from experience, if someone is anxious and frightened about things that are largely in their heads, then it won't matter much what you do, they will still find something to be anxious and frightened about.

If you really don't want to have your mother to live with you, then don't let anyone make you feel bad or guilty about it - be very firm. I also love my mother but could never have had her to live with me since she could be difficult even before AD, and having had my FIL living with us (with AD) there was no way I was embarking on that again. It made any sort of normal family life quite impossible (I had 2 daughters coming up to important exams + a husband in a demanding job) and I was utterly exhausted with the strain of it all.

Please do bear in mind - apologies in advance for being depressing but I can't state this strongly enough - that whatever your motheris like now, it is almost certainly going to get worse, and maybe quite a lot worse.

If you can find sheltered accomm. that will take people with dementia that might be the way to go, but many won't take them, and TBH it can be very hard for anyone with dementia to adapt to anything new.

Could you perhaps arrange for carers to come and sit with her? I know this isn't necessarily an easy answer since some people won't accept them, but it could be worth trying.

As for adapting the garage, if you're really not prepared to do it and she keeps on about it regardless, then a white lie (or a big fat black one ;)) might be the order of the day. How about blaming it on the council, who are, ahem, no longer giving planning permission for such things? Or who are, at the very least, taking ages to consider any applications? It goes right against the grain at first, but fibs have often been the saving of many of us.

It may be that residential care will ultimately be the answer - this has been a huge and anxiety fraught step for many of us but there comes a point, etc... - and despite all the horror stories in the media there are some really good care homes out there.

All the best - it's such an exhausting and worrying time for you.
 

shark2

Registered User
Aug 22, 2012
136
n ireland
Hi everybody , many thanks for your patience and advice. I mentioned a sheltered dwelling to my mum and she was horrified at the thought....how could I do that to her etc. My mum is quite demanding and she just assumes that she will live with us. She doesn't know she has been diagnosed with alzheimers so I suppose that is why she can't contemplate a sheltered accomodation. have had a really bad day with her crying and begging to sleep on my settee - this is a 73 year old woman had has arthritis and a hip replacement. :eek::eek: What can I do? I stayed overnight with her last night, we go for tea tomorrow night and my sons will stay Thursday and Friday night. it makes me so sad and feel so guilty but then i feel that i am entitled to a little time without her - shes been at my house since 2.30 today and went home very reluctantly at 9 :(:(

I'm already on anti depressants and have just taken a diazepam to calm me down. I can't deal with all this - on top of that my son is studying for his A levels and I have a stressful job as a teacher.:(

Sorry to go on but sometimes it all gets too much.xx
 

cragmaid

Registered User
Oct 18, 2010
7,941
North East England
What can I do? I stayed overnight with her last night, we go for tea tomorrow night and my sons will stay Thursday and Friday night. it makes me so sad and feel so guilty but then i feel that i am entitled to a little time without her - shes been at my house since 2.30 today and went home very reluctantly at 9

I'm already on anti depressants and have just taken a diazepam to calm me down. I can't deal with all this - on top of that my son is studying for his A levels and I have a stressful job as a teacher.
Stop right there and read what I have quoted. Now listed to your imaginary friend telling you all this is happening and she cannot manage. What is your honest gut-reaction? You cannot, and must not for the sake of your own health and your entire family's sanity allow it to continue. If your Mum's dementia is still classified as "mild" you and she have to sit down and discuss her future calmly and rationally.
I have been in your shoes some of the time. I luckily have not had to manage Mum and her illness whilst working or contending with teenagers, but I live a 5 minute walk away, I am, to all intents and purposes, an only child ( sister lives 7000 miles away) husband taken early retirement, I have severe back problems and multiple other health issues,(fortunately none truly major). It got to the stage that I was spending more time with Mum than with OH. If she'd come to live here, we would have been divorced within a week. Mum has been in a care home for 4 months now, and having refused to acknowledge her need for it, battled and been downright vicious to me, has now become compliant.
If I'd had to contend with teenage angst, hormones and exams, coupled with having to put one of my kids out of their room and into the garage, because whatever you did to it, the garage is how it would be named, and deal with a progressive illness which by it's very nature is not predictable, I reckon I'd need more than drugs to survive.
You have not mentioned any input from the Soc. Services have you? Ring them and ask for a carer assessment. Talk to Mum's Mental Health team or her GP. Keep diary notes to back it up. If she is not on medication such as Aricept, enquire about it. Tell them about her anxiety and the effect it is having on her and you. And the biggest thing of all is BACK OFF a bit at a time, cut down the hours and if she moans, so be it. Nobody dies of moaning....at least if they have I must have missed it.:D

ps Sorry this was a long post .x.
 

ggma

Registered User
Feb 18, 2012
1,130
North Staffordshire
i think Cragmaid is giving you very good advice. It would not be fair on any of you to let your Mum carry on thinking that she is going to move in with you, and that if she keeps pushing you will give in.

Only you can take control of your own life, there have been a number of discussion on TP about people becoming victims, and others can describe it to you better than me.

Your Mum appears to be trading on your kind nature and guilt at her being your Mum and you feeling there is only you to help her. There are other sources of help, but you have to decide to step aside and let others fill the gaps that need to be filled. your Mum may not want to accept other types of help, but if she needs support then unless she no longer has the capacity to make decisions, she needs help to understand what is happening to her and that she will need to accept help from others as her illness progresses.

I know that it is much easier to make decisions in a professional role, I am sure you daily make decisions every day in your job, and do it well. It is very hard but can you find a way to step outside yourself and see what you are allowing your Mum to do.

I am sure everyone on TP will offer you support, this is such a difficult time for you, sadly problems with dementia do not go away, is a difficult journey and I do hope that you can get some help and support for your Mum to give you some respite and space to feel better.
 

Bedelia

Registered User
Dec 15, 2011
158
Hi, shark2: this all sounds very, very familiar to me. I too am an only child, but have no partner or children. Please take my case as a warning and take the good advice you have already been given here.

I'm afraid the more time you give (or apparently have available) to your mum, the more she will demand, because she literally can't remember what you have already done for her - and eventually you will have no life of your own. Things sound hard enough already, but at least you have a family and a job to occupy you some of the time and give you a reason not to spend all the time with your mum. I gave up a staff job to go freelance before my mum's dementia became fully apparent, simply thinking it would give me more flexibility to look after her in old age should she need it (I lived 100 miles away and my father died young when I was a student, so I had always anticipated looking after my mum when the time came).

However, it was a huge mistake. Because she wasn't diagnosed with dementia until very late on and in crisis, her increasingly paranoid and clingy behaviour just seemed to be symptoms of our close relationship for many years, and as it worsened gradually (along with physical crises, such as falls) I found myself spending more and more time living at hers, without ever making a conscious decision to become her full-time carer. As a freelance I lost work and have now completely fallen out of my previously successful profession.

Mum's paranoia and delusion eventually became so bad that she couldn't be left alone for any time at all - and I mean any: if I went to the loo or to put the kettle on, she would be looking for me, shouting out distressed. I couldn't leave her to go shopping and became a prisoner in the house for much of the time. I did still return to my own home in between, as she never acknowledged that there was anything wrong with her and refused all external help, but I could never get on with anything of my own, as she would be on the phone day and night with lurid delusions and upsetting accusations or weepiness.

I had to engage a home carer behind her back and employ all sorts of subterfuge to facilitate this (we had to pretend this was a 'health visitor' who then became a 'friend who popped round for a cup of tea and a chat'), just to make sure she ate at least an occasional meal under supervision and had come to no harm. (I would stock up the fridge, but the food would always be there when I came back, even though she swore she ate).

In the end, she could no longer recognise her own home, not even the bedroom she had slept in for 40 years, and would constantly be ringing me, saying she was "terrified in this empty hotel. Why have you dumped me here?"

As others have suggested about your mum, if the fears are in her head, no amount of practical assistance, company, or reassurance will allay them, I'm afraid. Things like alarms and call lines are, as you say, more trouble than they're worth for someone who cannot remember how to use them and may well become panicked by sounds or instructions they don't understand. The only time mum's Aid-Call alarm was actually a help rather than hindrance was when she finally went wandering under a very shocking delusion and the police were able to trace me as a key-holder via the base unit in her house. (She herself had no idea how to use it.)

Sorry if this seems a terribly negative and frightening post, but your story sounds so very like mine that I just have to impress on you that you absolutely shouldn't feel guilty about making some other arrangement for your mum than having her to live with you. Remind yourself that even if you feel obliged, it's not fair on your husband and children - particularly the one who will have to give up his room.

(Dementia, as this shows, can result in some very selfish behaviour, because the person literally has no awareness of other people's needs and will often feel constantly aggrieved at apparent abandonment, because they can't remember all the times you actually have been there. I have been hugely shocked and saddened at my mum's change of character - she was previously the kindest, more thoughtful, loving, selfless, and generous person with a famous sense of humour. Now she has become overwhelmingly bitter, resentful, and perpetually frightened, which means she has no sympathy for others - even those who have exactly the same behaviours as herslf.)

My mum is now in a secure (but not institutional) dementia unit. Do investigate any sheltered housing near you, but from what you say of your mother's symptoms, I think it would be most realistic to be considering somewhere specialist with secure keypad access, as the paranoia means she may already not be safe to be in an unfamiliar place without secure facilities and staff trained in dementia care.

General residential developments will often not be equipped to cope with wandering or disruptive behaviour and may well request that a person moves out if their dementia becomes more advanced or upsets other residents. Rather than have the trauma of moving your mother twice, it may be better to bite the bullet and look at more specialist care now. I dreaded doing this and put it off for far too long; please don't wait for a crisis as I did - and don't give up what remains of your and your family's independent life.
 
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Chemmy

Registered User
Nov 7, 2011
7,591
Yorkshire
I remember your first posts, Bedelia, and I think you and the others have told some salutary stories.

I had to say, quite categorically "No, mum, you can't come and live with me" (and this was to someone who always insisted she would never ask, pre-dementia).

Yes, it was hard. And upsetting. But it was absolutely the right thing to do and I have no regrets.

It's in your hands - your mother cannot force her way into your home. So stand up for yourself and if you find that too difficult, stand up for your family for they don't deserve this. I'd stop the boys staying over - I don't think it's right for them to become carers at their age, particularly when their grandmother is in no actual danger.

And the biggest thing of all is BACK OFF a bit at a time, cut down the hours and if she moans, so be it. Nobody dies of moaning....at least if they have I must have missed it.
Cragmaid, you made me laugh at the but it's SO true:D

I'd be off out there, starting today, visiting as many sheltered housing complexes and CHs as I could to see the lie of the land in your area. One of them will feel 'right' - it's often come down to going with your gut instinct, but Bedelia mentioned looking ahead as well as dealing with her needs now, which is very sensible advice.
 

penga

Registered User
Jun 4, 2012
26
HI

For what its worth, Bedelia's story could be my SIL, NO LIFE and very possibly a life threatening disease. My MIL is still in sheltered accommodation desperately trying to rule all our lives (but she was living there long before the dementia).

Take care

C
 

Lucy Lastic

Registered User
Nov 30, 2009
135
Dorset
The only thing that stopped my Mother's paranoia and delusions, (which made her frightened in her own home) was medication.

I had to have Mum sectioned and admitted to an assessment ward, but they got her medication levels right and she was discharged to a residential care home. She no longer has delusions and is no longer anxious.

I wonder if your Mother could be assessed by the local Mental Health Team and they could prescribe the necessry medication, maybe she could remain in her own home? The taking of the medication would probably have to be supervised of course.

Just a thought.