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My Daughter, my carer

Discussion in 'I have dementia' started by Jeanie 73, Jan 15, 2017.

  1. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    My daughter is struggling at the moment, sad to say, but for the first time ever a week or so ago, I felt resentment from her. Luckily a member of the Memory clinic staff was due to pay a visit and they are hopefully going to try and get some respite care in place.
    Daughter and I have talked and she said she felt trapped, she will be 47 this march, I feel helpless to help her!
    She is going to try and get in the Doctors tomorrow re depression, part of the problem I'm sure is that she is so meticulous in thoughts and deeds (not sure if that is quite the description?) of how she is!
    She does occasionally get a day away to meet up with friends on a forum she goes on.
    Some of the restrictions she puts on herself are not needed in my present state. I.e. I can still do my own meds, ok I have to be careful re falling as not steady on my feet, due to Osteo arthritis and fibromyalgia, but it is a long time, a couple of years or more since I had a fall. I always reassure her when she does go out, that I will not do anything silly and so long as she leaves me some food, I will be fine. Afraid I no longer remember how to use the microwave and did not use the cooker because I would forget to turn it off! But the cooker has been removed, so no fear of that now.
    I'm quite happy with something cold to either eat or drink.
    I think some of her worries are that her daughter my granddaughter comes in when she is away, but will be going too University later this year! But granddaughter didn't need to come in anyway.
    I'm afraid I'm a glass half full person and Daughter is a glass half empty.
    No doubts faults, if there are faults on both sides!
    Would be grateful for some kind of advice as worrying does not help either of us [emoji173]


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  2. Slugsta

    Slugsta Registered User

    Hi Jeanie,

    How lovely of you to post here on your daughter's behalf, I think you must have a very loving relationship!

    It sounds as if your daughter is something of a perfectionist and is finding it hard to meet her own expectations of how she should do things. I am glad she is going to see her GP, I hope she is able to open up and describe her situation to him/her.

    I am also glad that you are prepared to consider respite for your daughter's sake - maybe you will both be able to get away and have an enjoyable time :)

    All I can suggest is that you are as open as possible to outside help, even if you don't believe you need it, for your daughter's peace of mind. Allowing someone to pop in and ensure you have had a drink and something to eat might be all that is needed for your daughter to go out and have some time to herself.

    I'm sure others will be along with helpful suggestions soon :)
     
  3. Tin

    Tin Registered User

    May 18, 2014
    3,710
    UK
    Such an amazing post, never ever read one like it on here. Your daughter sounds a little like me in terms of keeping up high standards and of course worrying about you. Sounds like see cannot let go and if she does not, she could burn out way before the time when you really need her. Or it could be that she is having a hard time to accept all that is happening to both of you. If dreading the time when granddaughter goes off to university, do you have a close friend who would agree to pop in and spend some time with you while your daughter continues to attend her forum meetings.

    Hope she gets some useful advice/help from her gp tomorrow.
     
  4. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    I'm nearly the same age as your daughter, Jeanie, although my Mum (82) is much further along the road and I look after Dad as well so don't work, nor do I have children.

    I used to work in Recruitment, Sales and Marketing and was very much the perfectionist in that career, very on the ball, very much thrived on the stress and the high demands of the job. Now in my new role some of the skills I employed to be successful in my career, such as negotiation, organisation and getting to speak to the right person to get results have proved to be invaluable.

    But I do get frustrated, I do feel resentful (obviously I try not to show this but I know Dad has picked up on it) and I do feel socially isolated. I try to keep other aspects of my life going as much as possible but I often feel I am just fading away and am looking at life through a window while everybody else gets on with it. However, when I DO get to see friends and have fun I really do 'go for it' and that helps me to keep actual depression at bay. I guess some people are more prone than others. I prefer to embrace the good times when they come along, so I am probably more like you in that I am 'glass half full'.

    I think what really affected me in the early days, and maybe is part of what your daughter is experiencing, is the feeling of being out of control of the situation.

    You see, when I was in charge of over 100 temporary staff it was VERY stressful, but I enjoyed the stress and the challenge because I had the power to influence the outcome, be that by using my negotiation skills, quick thinking, being able to multi-task or sometimes just pure neck! Basically, I could potentially control what was happening. And if it didn't work out, well, it was a fresh start in the morning.

    I can't control what is happening to Mum and Dad. The people I love most in the world are slowly being taken away from me and I can't do anything about it.

    So, in the early days especially (and even sometimes now I'm afraid!) I was Carezilla. Bringing in new equipment, strategies to try to delay their deterioration, arranging clubs and days out, getting people from various organisations round to find out what they could offer.... It was my way of trying to take back control. But it was too much for my Dad, at 87 (he is now 89) to deal with that much change on top of the bombshell of them both being diagnosed within months of each other and he resisted. I saw his resistance as refusal to accept help for what was happening, it all got a bit fraught. I felt I was failing at the only really worthwhile thing I have ever done in my life.

    I know Dad would hate carers coming in and Mum would just be confused so I am putting that off as long as possible. That meant that I also put restrictions on myself.

    As to giving you advice, I'm not sure I can. It sounds like your daughter is incredibly self-critical and sets herself extremely high and, in the case of being a carer, unrealistic standards. Also she is probably frightened. I know I am!

    I think the only way she will start to relax a bit more is to accept that, as long as you are safe, happy and your needs are being met, she is doing a great job and needs to cut herself some slack. You can reassure her of this but she has to believe it and that is down to her.

    When I get overwhelmed I have my brother to reassure me. He has a wonderfully calm and pragmatic way of looking at the world and our situation. Does your daughter have any understanding siblings who could take her for a coffee and a chat?

    It's a shame I can't clone my lovely brother and send a copy to all TPers. He should be available on prescription to all carers!
     
  5. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    As always many thanks for replies it means such a lot, as I'm sure others will say, it helps to see a situation through someone else's eyes.
    We don't have close friends here or relatives that could just pop in. Joy my daughter does have a couple of friends that are always there to speak too, thank goodness.
    I actually read something that whilst not solving the problem may help and I will discuss it with her as soon as possible,will depend if she gets doctors appointment tomorrow.
    It is a simple question ' how can I make your day better'
    If we ask each other that question and answer honestly, it may help for now!
    It's not something most who have Alzheimer's/ dementia are capable of asking, but for now, I am.
    It is not always a blessing! I take heart from knowing I am far from unique, in knowing what is happening to me and around me! Yes my mind does remind me fairly often that it can seem too remove my memories at will! But so far I can remind myself that its not always the same thing and that if I don't know something one day I may well the next.
    I will post as and when we hopefully go some way to if not solving at least alleviating it[emoji173][emoji173][emoji173]



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  6. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    Pleased to say my daughter got to see the doctor today and a very understanding one too. Thank goodness. Also the The family support people contacted her and said they will fund a break for her as and when it can be arranged! It will all depend on what can be provided as support for myself, but we are both feeling more hopeful.
    I dare to think that there is more support for us than we are perhaps led to believe by the media[emoji173][emoji173][emoji173]


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  7. Tin

    Tin Registered User

    May 18, 2014
    3,710
    UK
    That's good news. Just hope that Joy can relax a little. Still think she should turn to her friends for other support, my small band of friends have been great especially at visiting and bringing lunch and wine along! Take care.
     
  8. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    She does have friends she can talk to, but they don't live here so not able to give physical support.
    Myself and my sister are the only ones left in our family,our parents and brothers have all died, and my sister lives well over a hundred miles away.
    Those who were my close friends were older than me, and have also died.
    My daughter is the only one I get to speak to most of the time!
    A sign of the times I'm afraid. xxx


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  9. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    Perhaps I need to explain as to how we have become so isolated.
    I have lived in this part of town for over 50yrs and was formerly a councillor for the area. Over the years and now more than ever it has become a huge multicultural area, many of the original inhabitants have moved on or died, very few left who knew me, if any.
    We no longer know our neighbours in many cases they change regularly and few speak English.
    We stay because we have no where else to go, plus the property is ideal for our situation. I am on the ground floor in my flat and daughter and granddaughter are in the flat above me. Over the years we have created a pleasant garden and we each love our flats.
    I'm certainly not against any of the immigrants who live here, but each nationality keeps to a particular area the do not integrate.
    The last of our longer term neighbours has put their property up for sale so soon they to will be gone!
    There are very few familiar faces, if any!
    The very real problems are mainly my age, and yes the changes in the area and how we live today! People no longer stay in the same area as much as they used to and families are more wide spread! Plus we are all living longer, not so much of a problem if you are fit and well but.........


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  10. Tin

    Tin Registered User

    May 18, 2014
    3,710
    UK
    I kind of of know what you mean. I moved from London to my present home in a village 25 years ago and although the change of neighbours has been slow, basically every 5-6 years, I have now become 'the old lady next door' ! At least that is what the post man told me when he delivered my mail to new neighbours! They have been here 8 months and I have never met them. When I moved here I introduced myself to everyone I met and then backed it up with a Sunday lunch invite. I still know lots of people in this village but these days I have noticed that newbies do not seem to want to mix with long standing villagers, they always seem to be moving on.
     
  11. Haverton

    Haverton Registered User

    Sep 12, 2016
    53
    Essex
    #11 Haverton, Jan 23, 2017
    Last edited: Jan 23, 2017
    Hi Jeanie thank you for such a moving post. I identify somewhat with what you have said. Whilst I have no advice to give you which is sad because you like others have given me such support over the short time I have become a member of this forum.

    My wife is my carer and although I have been diagnosed with the early stages of mixed dementia I am 63 so I fear that she has a long way to travel down an uncertain road. Sadly my wife is already showing signs of strain which is underpinned by the unforgiving nature of my dementia. ( My grammar is not as it once so I hope that you get the gist of what I am trying to say) I spend two day's a week outside the home whilst I engage with other activities. Presently this is the only respite she receives. It is our hope that we will find and access outside agencies who can best help.

    Like others have expressed elsewhere I have also travelled some distance (300 mile) to court the marry my wife. This is the best thing I have ever done. i find myself with no friends I can call on for help. Whist close family members support us in part they lead busy lives themselves and thus have commitments of their own

    Thinking of you and your daughter.
     
  12. creativesarah

    creativesarah Registered User

    I am glad your daughter's trip to the doctor went well. I am fortunate to live in a shared house with friends so it doesn't depend on one person keeping an eye on me.
     
  13. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    Well we are a little further along the road, a Social worker came yesterday and spent over two hours here. Mainly taking details and assessing my needs.
    We all agreed that what would be best would be for me to go into respite care, how often and how long for is still to be decided.
    My daughter had got mixed up as to what the grant would be for, it would actually be too pay for my respite care.
    The last few weeks have been stressful for us both, daughter has been more forgetful (due to stress obviously) and I realised I was no longer using my disability buggy for fear of going out on my own! So arranged for it too go to a local community charity. I had no idea as to how much that affected me mentally! Suddenly the last bit of my independence had gone, the fact I hardly used it made no odds to how I felt knowing I was stuck here and could not get out!
    Whilst I accept the need for my respite care, I just feel drained, totally drained!
    From first being given my diagnosis I have fought to put everything possible in place for my daughter, to make things easier for her when I'm gone.
    My funeral is organised and paid for, my will is done, daughter is on my bank account and whatever money is there when I go it will go to her. There won't be a fortune, but enough for her to move if she wants or needs to. It doesn't stop me worrying about her and how she will manage when I am gone.
    We don't ever stop worrying about our children, what ever age they are!
    Thanks again for all your replies, I feel that now I should just relax and what will be will be! Love too you all xxxxx


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  14. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Bless you, Jeanie, your post has brought a tear to my eye and made me wish I was a better carer for my parents. You're an inspiration xxx
     
  15. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    [emoji173][emoji173][emoji173][emoji173]


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  16. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    The latest on trying too change how we get more individual time for each of us!
    Well! It's been an interesting day[emoji847] opened curtains this morning too a sunny day decided to have a go at going round the block, walking from my wheelchair.
    Was so nice out decided will go too the market, got to the (ten foot) we normally avoid them! Got just past the footpath leading to the next street when a man seemed to appear from nowhere, he realise I was frightened and said, it's ok lady I no hurt you, want too help! Bless him, he pushed me in wheelchair down ten foot! Not much English east European[emoji7] then needed to cross road and a youth asked if I needed help, and pushed me across. Got over another crossing and then could freewheel into town and went round food hall.
    Did realise that I would not be able to get home under my own steam! Then Joy text me and came to get me, we enjoyed a look round and a couple of stops for lattes sat in the sun, was surprisingly warm. Lesson learned, I may not be so lucky another time as to who I bump into!! So we agreed that some days Joy would see me into town and then collect me when I had had enough, giving both of us some space[emoji846][emoji846]
    I do realise that I was very lucky that nice people helped me, but could have been so different!!!

    A ten foot round here is the access to garages behind the houses, wide enough for cars to pass, but often very quiet![emoji848][emoji846]

    Summing up. It was not a wasted effort on my part or Joys!
    We have talked more!


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  17. Tin

    Tin Registered User

    May 18, 2014
    3,710
    UK
    You call it a ten foot. Not sure if we had a name for that kind of area, but when children we were always told not to take the short cut through a similar area.
     
  18. MollyD

    MollyD Registered User

    Mar 27, 2016
    1,696
    Ireland
    Jeanie, so glad everything worked out, particularly that you and Joy talked more as a direct result. And yes, cheers to the fact that there are still good people around who will help out en route, out of nowhere.

    We're all muddling along/through. Dementia isn't the only cause for miscommunication. But it needs to be noted that, here, it was a catalyst for better communication, seems that's down to you and Joy.

    Love reading your posts. X
     
  19. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    Thanks [emoji173][emoji173][emoji173][emoji1319]


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  20. Jeanie 73

    Jeanie 73 Registered User

    Apr 20, 2013
    173
    N Lincolnshire
    Another week further on, still working things out, but improving[emoji106]

    It's been a quiet week and almost head pain free, had two really good days,so good you start to think 'they made a mistake'.
    Joy and myself are learning on the job, so too speak, but we are making progress. joys new meds are helping and I tried out using my wheelchair indoors and it means I can actually do more and achieve more,doors are just wide enough so I can get into both the kitchen and living room.
    I stopped trying to do things because I was so unsteady on my feet, plus Joy worried I might fall also I had scalded myself twice trying to make myself a cup of tea. We have a different kettle now so checked there was enough water in it to make a cuppa, but not to much to make it heavy and made a lovely one. It's ridiculous really, but had a real sense of achievement.
    I have also ordered well Joy did, I still get confused by any kind of forms or ordering, a new disability buggy! One that can be taken apart if needed, much smaller than the ones I had before, but then so am i[emoji3] I have had to use one for the last 12yrs or so.
    Moved here as it was close too town one way and country side the other, also an area I knew,but soon realised I could not make it into town walking and spent most of my time sat on a bench if I did!
    Joy is happy for me having it and no short cuts only the way I definitely know! I maybe won't use it that often, but it knowing that I can that matters!!!
    Have to admit that I was so scared and felt so vulnerable when I tried using my wheelchair to get too town, I had bad dreams for a while, was that man really going to help me! I really don't know! I was very lucky he did!
    No doubts there will be other trials too face, but for now we are both much happier[emoji173][emoji173][emoji173]
    PS Olly hitches a lift on my wheelchair soon worked out if he went up his steps he could climb on my knee[emoji23][emoji847]
    PPS Olly is my little dachshund xxx


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