I don't know what to do for Mum

momkey58

Registered User
Aug 17, 2009
9
Somerset
Mum is 73 and has vascular dementia and heart disease. She is living alone in a McCarthy Stone appartment with careline in her flat and a resident House Manager who is there to "manage the building not the residents". We have home care visits twice a day to make sure Mum eats properly and takes her medication.

This has been working OK until the last few weeks. Mum will not stay in her flat and sits, with her coat on in the residents lounge "waiting for my daughter". She no longer knows how to entertain herself and is now very anxious if she is alone. The other residents are very worried about her and keep telling me what a big problem I have. Some are very kind to Mum while others are starting to think she is strange. I have been warned by the Manager that Mum has been letting strangers into the building and that if she keeps doing this we will have to "look at what we must do". It's no good telling Mum not to let people in as she just forgets 5 minutes later and after all she thinks she is being helpful.

I try to have Mum with me as much as possible but I am not able to have her living with me. My partners parents have both recently died and he is still trying to come to terms with this and help me with Mum at the same time.

Our CPN keeps telling me that there is much more we can do to keep Mum at home but I am not sure she wants to stay there any more. The trouble is when I look at care homes locally where they will take residents with memory problems my Mum doesn't seem to be as bad as the others and I worry that it will frighten her to go there. I am also being told that lots of people cope for much longer than I am and that is making me feel very guilty that I cannot do more!

Mum has worked all her life so did not have hobbies, never played games and hates bingo and quizes so all the activities at day care would be totally alien to her. She was a nurse specialising in hospice care. She used to give so much to all her patients and their families and I am so sad there isn't a nurse like Mum who can help her when we need it - there are no Admiral Nurses in this area.

Reading all the other posts on this site I know that lots of you are much further along the road than we are and are still coping with your loved ones at home. I take my hat off to you all and admire your patience and dedication. My heart tells me I should be bringing Mum to live with me but my "sensible head" tells me that this would end in tears for us all.
 

danny

Registered User
Sep 9, 2009
3,342
cornwall/real name is Angela
Hi,day centres are changing their culture from group activities to more individual stimulation.Look for a day centre specialising in dementia,you might be suprised.You may find one that can occupy mum doing things like filling in charts,making a bed,folding clothes etc.The staff should get to know more about what your mum did and work with you to come up with meaningful activities,it is worth asking around.Take care,Angela.
 

Pescita

Registered User
Oct 31, 2009
122
My heart tells me I should be bringing Mum to live with me but my "sensible head" tells me that this would end in tears for us all.
I think you know that you have to listen to your "sensible head". I also know how much emotional turmoil that involves - I am very familiar with the feeling that I ought to be able to cope with more because other people do! But you have to be realistic about your own circumstances, and not allow feelings of guilt to dictate the decisions you make.

My Mum (79)has vascular dementia & was just about coping at home alone, with carers visiting 4 times a day & one day a week at a day centre. But she was very lonely & anxious on her own, and I could not spend more time with her than I was doing. Eventually she went into a care home, ostensibly for "respite" but really to see how she took to it. She settled well,& is still there nearly 6 months later. The way I see it is that although it wasn't the ideal solution, it was the best solution that was realistically available. She isn't in a "dementia only" home, as I felt she wasn't far enough down the line for that - however she is much more physically able than most of the other residents, & sometimes that makes her seem out of place. But I don't think I'd ever have found a home full of people just like her! And I'm very glad that I didn't wait until things reached crisis point before exploring the care home option.

I wouldn't rule out trying the day care option though, even if it might only be a fairly short-term option. My mum did have a lot of social activities in the past, but not the kind of things you mention such as bingo & games. However, the day centre she went to offered other options, such as listening to music & looking at old photos of the local area, & they were also taken on trips out - pub lunches etc. Oddly enough, since she's been in the care home she's been joining in with bingo & games, & even with craft activities such as card-making, which she would have hated in the past!:rolleyes:

And I'd like to join you in taking my hat off to all those fantastic full-time carers who cope with so much at home.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
My feeling is (unfair though it may be) is that it is very easy for the CPN to say that there is much more that can be done to keep your mother in her own place, and that may well be true, but is it about keeping her happy in her own place? She doesn't, I have to say, sound very happy to me.

I agree with everything Pescita has said: a residential option may not be perfect, but there's not a lot perfect about her sitting in the lounge waiting for you (or someone) to come.
 

lilly-rose

Registered User
Jan 17, 2008
8
hillsborough sheffield
hi,
just wanted to send you some hugs as i know how difficult your situation is. we moved in with my husbands gran 4 years ago to care for her. she lived in her own house but she was starting to do stange things so was decided that we wold be the 1s to help out. gran had started waiting outside for her bus to pick her up, then her daughter. it got to the tpoint that she wouls be outside the house from 4am waiting for the day care bus to pick her up when it didnt come till 11 am.
dont feel guilty hun, we all deal with things in different ways.
gran only lasted 2 years with us before she went into a home.

she did go to day centers 3 times a week towards the end though so it might be worth contacting your social worker for advice on this.
dont feel the care homes are not right for her. our gran seemed as though she wasnt as bad as the others but trust me she is probably not far behind. chances are she would enjoy the company of a care home with the other residents there.

go and look hun and take your mum with you so she can look and nosey round.

i still feel guilty for putting gran into her home but she was a danger to us and herself. you will still be there for her sweet, its just a new home with more help.

sending lots of love xxxx
 

dillydaydream

Registered User
Sep 30, 2009
75
Buckinghamshire
Hi
My mum lives with us but still spends most of her time (when she's not at the Day Centre) waiting to go somewhere so, even if yours was living with you, this wouldn't prevent the anxiety or need to put on a coat and wait for the unknown person to come and take her to an unknown place! Last night was particularly bad and she just wouldn't go to bed because she knew somebody would be coming to take her out!

Our Social Worker also says my mother isn't bad enough for a home and refuses to acknowledge her level of distress when she's on her own. Fortunately (or unfortunately) because Mum can afford to pay her own care fees, I am able to ignore this nonsense and, after much searching and lots of tears, have found a really lovely home nearby. Mum is top of the waiting list so I haven't yet had to bite the bullet and actually move her in but, in my more saner moments, I know it's for the best.

Your words about not being able to entertain herself really rang true. This is the whole crux of the problem - left on her own, misery and confusion reign. Once Mum is surrounded by other people, she blossoms and forgets that she forgets and is able to enjoy herself.

So you really mustn't beat yourself up about this. Taking her to live with you would not solve the problem. My life is living proof of this!

love
Carolyn

Your phrase
 

julieann15

Registered User
Jun 13, 2008
2,012
Leicestershire
We have recently moved mum into a care home. In her flat confusion/agitation and loneliness. In the home she has really settled as all the responsibility has been lifted from her (and us I hasten to add.) She is only a mile from me now which is a bonus as she sees me and her granddaughter most days(even if it is only for 30 mins or so)

She has however become a green eyed monster and does not want to share 2-year old Erin with the other residents:eek::eek:

For us and mum it was the right decision but more importantly the right home. Mum was put on the waiting list in 2007 needing the place finally in October 2009.

Love Julie xx
 

Dibs

Registered User
Jun 19, 2009
1,903
55
Hampshire
Hi
Reading your post it could be my mum that you are talking about. She also lives in a McCarthy Stone Apartment and has carers going in 4 x a day and a sitting service by the same care agancy twice a week.

My mum like yours doesn't entertain herself anymore she flicks through the papers and magazines but doesn't really follow the threads and she doesn't watch television. She spends a lot of time lying on her bed more out of boredom. She has also taken to wondering the corridors at night and knocking on her neighbours door at about 10.OOpm or 6.00am asking for me:( The house manager has mentioned that she has seen mum wondering about and I know it is because mum is beginning to loose track of time.
Mum is on a waiting list for a day centre as I think she would really benefit from this and also Mind who I am waiting to hear from with regard to providing a companion for mum.

I also feel very guilty I see mum every other day and at weekends but it never seems enough and I know deep down that it wouldn't work out if she came to live with my husband and I. I am monitoring mums wonderings and I will have to decide at some point that mum will probably benefit moving to a care home even though it breaks my heart to think about it I know it will be for the best.

Mum is fine when she is around people and when I take her shopping, garden centre, out for a drive etc she loves it.

Hope this helps to know that I and others feel exactly the same as you do and its why I think that TP is a wonderful forum to be a part of.
Take care.
Love (Dibs) xx
 

momkey58

Registered User
Aug 17, 2009
9
Somerset
Thank you all so much for taking the time to reply to me. It was a great help to read all your kind messages this morning as we had a bad night last night. Mum phoned me saying she was feeling terrified and didn't know what was happening to her. Fortunately as I only live 10 minutes away I could get there quickly. She was convinced that she was still nursing and had given all her patients the wrong medication.

It took me a long time to calm Mum down this time - usually I can do it within a few minutes of being with her. She had got into this state within half an hour of her evening carer leaving which shows just how quickly things can change.

Anyway I have read all your thoughts and will be looking at our local day care places again. It may keep things manageable for a bit longer but I think I should also get her on the waiting lists for a couple of residential homes too.

Thank you all once again - I know TP will be a regular spot for me now! XXXXXX
 

Margaret W

Registered User
Apr 28, 2007
3,725
North Derbyshire
I don't want to push my view, but it does sound as if you should start to look at care homes for mum. Perhaps not right now, if you think you can cope, but perhaps in readiness for a move. It will give you a feel for what is available, and what questions to ask, and save a panic if that ever arises.

I'd just make some enquiries for now.

Love

Margaret
 

momkey58

Registered User
Aug 17, 2009
9
Somerset
Well it seems Mum has definitely taken another dip. She has been on the phone several times a day for the past few days saying she doesn't know what is happening to her and what she is doing. I am sure you all know that how ever many times I reassure her that things are OK and make suggestions for activities I keep feeling I should run down there and be with her.

For the past couple of nights she has been phoning between 2 and 3 in the morning. I tell her it is the middle of the night and to go back to bed but then I lie awake worrying if she is alright. This morning I sneeked in at 5am when I couldn't stand it any longer and she was fast asleep. Lucky her!!!

I am going to take her to the GP as soon as I can get an appointment to register my concerns and just to check there is no other underlying problem. I guess I am just worried that she is about to have "The Big One" and the next pop in her brain will do much more damage. Keep ringing but Monday mornings are always so busy and hard to get through.

Thanks again for listening everyone - it really does help. xxxx
 

Margaret W

Registered User
Apr 28, 2007
3,725
North Derbyshire
I read your post again, where you say that others have been managing much more than you. Well, forget that. They are them, and you are you. Some people are absolute stars, but we can't all live up to that. You say your partner's parents have recently died. It took my husband two years to get over his mother's death, and he wasn't particularly fond of her. There were a lot of issues he needed to address and he needed time to do so. So we are all different. You have your own situation to address and mustn't compare yourself to anyone else.

I can't advise much, I'm afraid. Only give you some verbal support. You clearly care very much as to what happens to mum, that is admirable.

I hope it all works out for you.

Best wishes

Margaret