1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Fattuatara

    Fattuatara Registered User

    Sep 5, 2015
    21
    Farnham
    Hi there.

    My Mum has vascular dementia - and I think, has reached a point where she isn't safe to live on her own any more (how do you know when this point has been reached?). I live many miles away from her, and always promised her, and said, that she could move in with me and my family when it became necessary. I wouldn't have it any other way!

    But, I'm becoming increasingly worried about whether it's the right thing to do, and wondered if anyone had any advice? Firstly, when she came to stay recently, she was so confused by the change in environment. It took her a couple of weeks after returning home to settle down. She forgot where she lived and had no idea where she was for a lot of her visit. I'm worried that moving her into an unfamiliar house and village, will accelerate her deterioration...but I live so far away from her, and as her only family, am really worried about her (despite the support she receives from social services of 30 mins a day care)....

    secondly, I have a young family - a 1 yr old, and 5 yr old, and a husband who works very long hours. I'm really worried about how I will cope, and about the impact moving mum in will have on the children. On the one hand I think it will be positive for all of us to spend time together, and I want to spend the time we have left - together. On the other, I'm worried about how the children will be affected, ie by mum getting up in the night and waking them, by my time for them being so much less etc...

    Does anyone have any advice? TIA xx
     
  2. PollyP.

    PollyP. Registered User

    Oct 8, 2009
    327
    Herefordshire UK
    Hi
    Before my Dad died (over 7 years ago) I promised him and my Mum that I would never let them go into a care home and would look after them both. We built a lovely bungalow/log cabin for them in our large garden, but sadly my Dad died just as it was finished. I brought Mum down here to live with us, but she never settled even though she lived here for almost 5 years. She longed for her home town of Manchester and the neighbours and friends that she knew. She would go to the day care 3 times a week and really enjoyed it, but would be very unsettled for the other days. I had to spend hours with her, especially in the evenings and would leave my husband on his own until it was time for her to go to bed.

    Eventually she got to the point where it was becoming unsafe for her to live here as she needed to be watched all the time, just as you would watch out for a child. She is now in a small care home, not far from me. She hasn't really settled there either and up until recently has always wanted to go back to Manchester.

    It's very difficult to cope and especially so for you with such young children. Perhaps your Mum would be better in sheltered accommodation in her home town. I often wish that I would have got Mum into a care home near where she had lived for 50 years. It would have meant not being able to see her so often, but perhaps she would have settled better.

    It's a very hard call to make, but I think you would be taking on such a lot with your husband working very long hours and your small children.

    Love Pauline
     
  3. jugglingmum

    jugglingmum Registered User

    Jan 5, 2014
    5,192
    Female
    Chester
    #3 jugglingmum, Sep 5, 2015
    Last edited: Sep 5, 2015
    Welcome to TP.

    I personally don't think you would cope for long with such young children.

    When crisis hit with my mum (with hindsight I should have spotted it years before hand) I had her live with me and my brother for alternating fortnights until I found her somewhere suitable to live, sheltered extra care accommodation. She was agitated when she was swapped over each time for a short time(my brother did all the driving) but not at the stage that she didn't recognise our houses. We didn't let her go back to hers(long story, but house wasn't habitable and we thought she'd lock herself in and us out).

    It was very hard on my then 8 and 12 year old children, and there is no way they would have coped with her staying and us having a normal family life. In my experience, whilst my kids are more independent now they still need a lot of input. She demanded my 12 year old do jigsaws with her when she got in from school and couldn't understand that she had to do homework - may seem simple but day after day it wasn't. She corrected my son every mealtime at table and couldn't understand not to, or that he was allowed to pour his own drink etc etc. My brothers children were 7 and 4, and she didn't like the 7 year old so would play with the 4 year old and would just pack the game up if the 7 year old tried to join in. She had a memory of the 7 year old being poorly behaved as a 4 year old and wouldn't alter it. Again can be dealt with on an odd occasion but day after day, not fair on the children.

    My children had had enough, but now enjoy Grandma visiting and playing cards and board games with her, but can only manage a couple of hours of being asked the same things every 3 or minutes, and then I take her back to her flat.

    We did this for 3 months and it was a struggle.

    If you think your mum is struggling you will need to move her, but look at sheltered extra care (sometimes known as assisted living) or a Care Home (much easier to sort out if she is self funding). I would also say move her to near you as you will need to be able to take her to Drs and other things which take up hours of my time. This way you can spend quality time with her, rather than day to day coping.

    My mum has alzheimers not VD but alot of things are the same. Your mum may stay the same for a while or she may deteriorate rapidly but she will deteriorate.
     
  4. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    there are other people who can meet your mum's needs now.
    there is absolutely no one else in the world who can be your childrens' mum.
     
  5. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,976
    Suffolk
    Can only repeat what has been said. I think it would be a total mistake for you to look after mum, 2 small children and a husband?

    My OH had vascular and Alzheimer's for 10-12 years. The first few years were OK, but as time wore on he could do less and less, then couldn't be left alone. Then came the more physical things. I think it would be totally impossible to cope with all that plus 2 children. I would do as JM suggests and find a care home or possibly assisted living nearby. Easy to visit, and someone else does the hard bits! As a move would confuse her, just move her the once, not to your house and then to a home.
     
  6. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    Hi Fattuatara (hope I spelt that right), welcome to TP
    It's a huge step to take, I moved mum in but after the kids had all left home and that was difficult enough, in the situation you describe 2 very young children and an OH who works long hours, I'd ask what are the alternatives?
    If she has a house/money could you consider a care home?
    Could you sell her house and modify your home (granny flat)?
    Could you get her into a warden flat near to you, as you live many miles apart that may be difficult.
    If your mum moved in would that be detrimental to effect on your children and your ability to be a good mum and have a satisfactory home life?
    Post a bit more and we'll all throw in some advise, but if it's a straight yes or no I'm saying no, you might be taking on too much and the ones paying the price would be your OH, you children and most importantly you.
    K
     
  7. velocity

    velocity Registered User

    Feb 18, 2013
    173
    North Notts
    I am sorry but it wouldn't be fair to any of you. Dementia takes up so much of your time mentally and physically, your children deserve that attention, and your partner, then time for yourself, you'd be exhausted. Xx
     
  8. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,578
    Female
    Auckland...... New Zealand
    I'm feeling like this now.
    My parents sold their house and we built a house for them on the back of our property 7 years ago. At the time my children were 6 & 11, my husband had (still has) life threatening health issues, and we didn't know what was around the corner.
    The move was to help my parents downsize and free up cash tied up in their property plus to help me with the children if my husbands health needs became more.

    Now 7 yrs later my husband is still in remission (from a brain tumour) and Mum 74 was diagnosed in the last 4 yrs Leukemia, Bowel cancer and 2 yrs ago Alzheimers.
    Thankfully her Leukemia & Bowel cancer, do not need any treatment apart from having bowel surgery 2 yrs ago.
    Dad 77 has cognitive impairment.

    Mums dementia has advanced considerably, and I am constantly on beck and call.
    My children and husband are coming off 2nd best alot of the time and I feel stretched to the limit at times. My children are now 13 & 18 but still deserve their Mums attention.
    Its been a year since we have had a family holiday and I have booked us a holiday in few weeks time and my Mum and Dad are going to stay with my sister. I can't even tell them we are going away until just a few days beforehand.

    Having a 1yr old & a 5yr old and a husband that works long hours, and add your Mum with dementia which is a lot like looking after a child but worse, because at least a child can remember and learn, would really push you to the limits.
    You would find yourself having to make choices between your family and your Mum, and at the same time trying to keep everyone happy.
     
  9. AndreaP

    AndreaP Registered User

    Anybody who cares for a dementia patient in their own home is automatically eligible for sainthood in my opinion.
     
  10. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    How much social life does your mum still have locally? I made the decision that mum would be better to move to a care home near me partly because she was no longer able to go out and participate in any of the social activities she had enjoyed and sadly hardly anyone came to visit her at home. So she was very lonely and miserable and bored.

    We looked at assisted living options but even her CPN advised that she was unlikely to be able to learn to manage a different place and would need constant support, so in the end we bit the bullet and went for the care home option.

    I can't say she was happy there, but we knew she was safe and we could all see her far more often. I used to take my little grandson in regularly and he was the only one who got a smile, but when he was tired I could then take him home. It was a definite plus that she could see him more often.

    I personally would not have considered having mum at home if I'd had small children; it's not fair on them.
     
  11. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,296
    SW London
    I agree 100%. It's almost impossible to understand how hard it can be to cope with dementia 24/7 until you are there at the sharp end. I know we didn't have a clue. And it's one thing finding out the hard way if you have only yourself consider - it's something else entirely if there is a spouse and children, particularly such little children. If your mother were well, and able to understand, I am sure she would not want you to do it.
     
  12. Angela T

    Angela T Registered User

    Jul 13, 2014
    187
    France
    #12 Angela T, Sep 6, 2015
    Last edited: Sep 6, 2015
    Hi Fattuatara,

    The answers to your questions are unaminous - and I think that you are asking these questions because you know, deep-down, that this is not what you imagined when you generously promised to take your mum in with you. You know that your mum's illness will get worse and that she will need specialised care.

    You realise it has come to the point where your mum is no longer safe in her own home (not managing her affairs, not properly fed, hydrated, medicated, kept clean, a risk of falls and other dangers to herself and to others...?)

    You are worried that a change in environment will accelerate her deterioration...?

    And you are worried how you will cope with 2 young children and your husband working long hours...?

    The short answer is, you probably won't.

    You only have to read the posts on Talking Point to see the constant stress and strain of dealing with dementia - in our own home or even at a distance (care home etc...)

    We have a "granny flat" - it's one of the reasons I chose the house we bought 3 years ago. Earlier this year, when I knew my mother could no longer live alone and needed care, my first thought was to move her to the granny flat, with carers coming in. EVERYBODY said "Don't!" - all the health professionals, my family, friends etc...

    It seemed mean, not taking her in, I didn't actually agree with them, but I listened and found a nursing home nearby, where I visit frequently, and we bring her home for an afternoon out, special occasions etc... I know now (3 months on) that it would have been a HUGE mistake, having her living donwstairs. I would have felt consumed by her Alzheimer's, and I don't even have children living at home.

    If you want to spend time together with your mum, it will be easier for you to do that if you do not have the full burden of caring for her in your own home. You could find a solution where she is properly looked after/cared for, and then you can be there for the treats, outings, visits etc...

    Take care!
     
  13. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    I agree with AndreaP. I had young children when my mum got to the stage of needing full time care. I must confess neither I or my two siblings considered moving her in. I found a home near to me and she moved in there. I am still certain it was best for her. Having gone through the " I never want to go into a home " she took to it like a duck to water. Mum was never very sociable in her younger days , (she was a deputy head of a large comprehensive and very intelligent ,she seemed to think many people were below her) but they got her involved in every activity going and she thrived. I'm not sure she remembered any of them as one day my sister was just at the home when mum was getting off the bus following a day trip to Llandudno( we all had proof too as that evening she was on screen on the local news ) when asked what she had been doing mum said nothing there's nothing to do!. I know some people never settle and want to go home all the time but mum never once asked about her house which her and dad built some 40 years previously she just seemed to be content where she was. I will always be grateful to her for that..
     
  14. Fattuatara

    Fattuatara Registered User

    Sep 5, 2015
    21
    Farnham
    Thank you!

    Wow! Thank you all so much for taking the time to reply to me. I feel quite overwhelmed so will write again tomorrow with more detail. But I wanted to say thank you to you all for spending time on me when I know you're all probably exhausted and overwhelmed yourselves. Xxxxx
     
  15. Linbrusco

    Linbrusco Registered User

    Mar 4, 2013
    1,578
    Female
    Auckland...... New Zealand
    With your user name, do you have a Kiwi connection :D
     
  16. Sunita

    Sunita Registered User

    Sep 7, 2015
    1
    As a dementia carer myself and with my experience if you already hadn't then I feel 1:before making any decisions it would be wise to know how far your mother's dementia is.
    2: with indecisive/emotional period you are experiencing, your mum's GP is one of the gateways to other required health professionals assistant and guidance towards taking any steps further for the best interest of everyone.
    3:hire a live-in carers so your mother can continue to live in her own house as long as possible is a very good option as there is no place like own home.Social Services are there to guide and assist as well.
    4:Dementia will progress as time goes by and reassess the care needs there on.
    5:Most importantly remember 'your mother or any mother will want their child/children/grandchildren to lead a happy life'
    Its mind boggling and guilt can cloud your judgement to make the RIGHT decision
    so take one step at the time and remember point 5 at all time :)
    My prayers and best wishes to you all
    x S
     
  17. Fattuatara

    Fattuatara Registered User

    Sep 5, 2015
    21
    Farnham
    Fattuatara

    Ahhh yes. A bit of a giveaway I guess. Do you?
     
  18. Fattuatara

    Fattuatara Registered User

    Sep 5, 2015
    21
    Farnham
    Mum's moved in

    Hi everyone who responded to my last post. Nearly a month ago now. I'm sorry it's taken me so long to reply, but since I last wrote asking you all for advice, I've had to go to mums, pack up as much as I could carry, and move her in with us. As it happened I had no choice in the matter.

    Mum was so unwell when I got there, she'd stopped cooking, eating, dressing herself and going out. It was such a shock, as I'd only seen her 4 weeks earlier and she'd been dressing, washing, walking and talking...and had had carers in who had not indicated to me that she was in anything like the state I found her in!

    she's been with us for 3 weeks now. And how do you all do it??? I've read some of the other posts on this group and see that even though I think we've got it tough, it's nothing compared to a lot of you.

    Honestly. I can only describe the last few weeks as horrendous. I miss my mum, her conversation, cuddles and her love for her grandchildren. She can barely talk now, she's still walking but just, she's incontinent, can't dress or wash herself, and is obsessively running water!. And she's so anxious. And, I'm so terrible at reassuring her no matter how hard I try.

    We had a council social worker round in the first week to assess mums needs, and she recommended we put mum into a home! After a couple of days of thinking about it I decided I'd rather try care at home first mixed with some day care sessions. We're three weeks in and still have had no help at all! The council tells me none of their providers are willing to come to our village. They keep insisting that my best (and only) option is to put her in a home. The cynic in me can't help but wonder if they're just palMing us off with the cheapest, easiest option for them! Perhaps this wouldn't seems like such an awful option if the three options she'd given me were ok. But they all got poor CQC ratings, and if the one I saw yesterday is anything to go by - are absolutely awful. The frustrating thing is that I can't get out to look at the homes because I have to look after mum - it's a catch-22!

    But the truth is that I'm barely coping. My daughter was an hour late for school this morning for the second morning in a row - because when I checked on mum this morning, she was stuck on the toilet (God knows how long she'd been there), and needed showering, dressing etc, but was physically unable to move herself. I had to leave my 15 month old in the care of his 6 yr old sister for an hour while I tried to get mum up, clean and dressed.

    The upshot is. You were all right! It's an impossible task. One I could maybe, just, manage if I was on my own. But I can't look after my bubba and his sister. We can't function as a family. And I feel dreadfully guilty. But the truth is, Im also am not doing a great job looking after mum :(
     
  19. Fattuatara

    Fattuatara Registered User

    Sep 5, 2015
    21
    Farnham
    Thank you

    Sunita, thank you for for your time and effort in responding to me. I'm very grateful for your advice, Particularly your reminder about point 5. I know my mum would hate me to be in this position. But I can't help but feel guilty about not helping her. She's so frightened, and anxious. I just want to wrap her up in cuddles and love. But those bedtimes, nights, and mornings, are unbearable. Thank you x
     
  20. Fattuatara

    Fattuatara Registered User

    Sep 5, 2015
    21
    Farnham
    Thank you

    Thanks Pauline. Your advice, like that of the others, is very gratefully received. thank you! I think you're right, I perhaps should have left mum in nottingham. It's hard to know. but I take some heart from you saying that your mum has now settled into the care home, even though it took s while. Is she happy there do you think? Xxx
     

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