1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

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WHEN IS IT TIME TO LET GO & STOP BEING THE CARER?

Discussion in 'ARCHIVE FORUM: Support discussions' started by HELEN, Feb 2, 2005.

  1. HELEN

    HELEN Registered User

    Jul 16, 2004
    36
    wales
    Dear All,

    Sorry Its Been So Long Since I've Posted But I Don't Have Access To My Computer Much As I'm Normally Living At Mums & It's At Home. I Felt I Had To Post As I'm Just So Confused. I Feel I'm Failing Mum As I Just Don't Seem To Be Able To Hold Things Together Anymore & Deal With All The Things That Need To Be Dealt With. Whats More Worrying Is That I Just Don't Care Any More. Today I Sat Here With Three Doctors Letters Asking Me To Make Appointments With Her Gp, Urologist & Haemotologist ( Mum Has Various Health Problems Besides Dementia) & I Just Couldn't Face & Just Sat & Cried All Afternoon. Mum At Day Centre.i'm Short Tempered With Her & Sometimes Wish She Would Just Die So She Wouldn't Have To Suffer Anymore. I Can't Seem To Think Straight Anymore & All I Want To Do Is Sleep & Inside I Feel Like I'm Shaking. I Feel Like I've Lost My Identity & When I Meet People I've Got Nothing To Talk About Other Than Dementia World . I Find Myself Hating Her & Then Hate Myself For Feeling That Way Because I Love Her So Much. If I Tell The Family I Can't Cope Then They'll Just Say Again Its Time To Put Her In A Home & I Can't Bear The Idea. None Of Them Want To Do Anymore Than They Do At The Moment To Help. It Seems The Worse She Gets The Less Family Are Able To Help Out ( Though I Don't Think Its Deliberate).i've Got A Carer Who Comes In Twice A Week For The Night So I Can Have 2 Nights At Home With My Husband But The First One Kept Cancelling At The Last Minute & Mum Won't Accept The New Carer.so Even When I'm Not There I'm On Standby. Just Wish I Could Switch Off & Have At Least One Whole Day A Week To Myself & My Husband. He's A Saint But I Worry How Much More He Can Take. I've Spoken To Social Worker Who Is Looking Into Respite For Me (she Offered Me This Some Time Ago But I Thought I Could Cope).what Do I Do Until Respite & Worried How Mum Will React & Feel Guilty For Sending Her As I Know She Will Hate It. She Spends All Day At Day Centre With Her Coat On Stood By The Door Asking To Go Home. The Rest Of The Family Can't Or Won't Do Nights With Mum As She Won't Sleep Through The Night & Up At Least 3-4 Times A Night At Best. Tried Sleeping Tablets But Either Make Her Aggressive Or Keeps Falling Out Of Bed . Trying To Get Rails For Bed.sorry I Know Others Have So Much More To Deal With. Maybe I'm Just Not Up To This & Should Let The Professionals Take Over. But So Wanted To Keep Her At Home For As Long As Pos Though. In My Head I I Know Mums In The Later Stages Now & Its Time To Start Letting Go Emotionally But I Wish Someone Would Explain It To My Heart Then Perhaps I Wouldn't Be Such A Mess.



    Helen
     
  2. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Helen, there are many on TP who will empathise with you, my self included. I read your post out to Andy, my husband, his first reaction, was that it is making it even harder because you are split between the two homes, he suggested you take her to yours so at least you could be with your hubby. This is what we did when Mum could not be left alone. Is that possible? Our next step was the day centre as you have done, how many days does your Mum go? We built it up to all five weekdays. The respite, TAKE IT!! as soon as you can, then ask them to organise a rolling respite every 4 - 6 weeks so it's on the calender when you get a real break, you and your hubby can then plan treats to share for that time. Ask for a care package to get your Mum up while you do the breakfast and in the evening to get her off to bed. She will kick up at first, but once you introduce the changes, she will slowly accept them. The night sits, carry on with those, and if you can get/afford any more, take 'em! Either get the care that gets Mum up or to bed to bath her as and when is your routine or what I did was a carer came in on Saturday morning, bathed and washed my Mum's hair, then we spent a happy time till lunch, when I rolled her hair and dried it and painted her nails for her. The key being it kept her amused and was not too taxing. You have to learn to delegate, if the family can't help then get in those who can, it's the only way if you are going to keep her at home. If this is now not an option, after trying so hard and the sacrifices you have made, no-one would blame you if you said yes it is time for a home, believe me. If she went into a home, you could visit as often as you liked, take her out, take her treats etc. Have quality time with her instead of the existence you describe. I think you are in need of a respite break right now, time to assess what you want to do, talk it over with your husband and the rest of your family without your Mum there. What ever you decide, don't feel guilt, you are not responsible for this horrendous illness and what it is doing to your Mum and yourself, she would not want you to feel this despair, you are doing your best to fight a battle with only one outcome. Thinking of you, love She.XX
     
  3. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Helen

    it is the worst thing in the world, isn't it - when one gets to this point.

    First thing is to make sure you keep YOURSELF on the rails.

    Second thing, and you may think this is definitely not what you want to consider, is that we must accept that there comes a time when we simply can cope no more under the current circumstances. We put it off and off, quite rightly, but the day does come for most of us when we have to hand over to someone else.

    Yes, a care home. I kept my wife Jan away from that possibility for as long as I possibly could, darn near ran completely out track for my caring train. I was fortunate, inasmuch as anyone can be in our ciscumstances. The matter was taken out of my hands, but now I realise that Jan is in the best place she could be. Her home is one of the best of which I have heard, certainly, but she is the better for having 24 hour care, and a superb diet. We are fortunate in her home, but there must be more around - I know that the company that runs Jan's home has more around the country, for starters and they are basing them all on Jan's home.

    Much as I wanted to keep Jan at home until the very end, I fear it might have been my own very end, if you see what I mean. Now, I can buy special things for Jan, I can be fresh and bright when I see her, and I can give her 100% quality time in my visits. I know she benefits from that.

    Do try and stand back from your current circumstances, and keep al your options open.

    My very best wishes.
     
  4. Louise

    Louise Registered User

    Dec 19, 2004
    22
    PEMBROKESHIRE
    Dear Helen,
    My heart goes out to you right now, having just read about your situation. When my dear mum was with us and her illness had taken her into it's big strong grip, i couldn't bear the thought of her going into a nursing home. I felt such a failier, and that i had let her down so badly, after all she had done for me in my life. I know how hard it will be for you, because, we never stop caring or loving the person whom is forever changing in front of our eyes. The most difficult part i feel is that we never know how they feel, and we try so hard all the time to come to terms with it, we get consumed ourselves. We put our own lives on hold and start to believe the more we do, the better it will get. It is so, so very trying.

    I joined this talking point just before christmas, three months after my dear mum had passed away. I didn't have a P.C. and for the total of 7yrs that my mum had Alzheimers, i didn't have anyone to really talk to who could understand how it was affecting me. Two years ago i started getting an irregular heart rythem and was referred to a consultant in swansea, my doctor, asked me some personal questions, and it wasn't long into the conversation that i broke down and told him about my mum and her illness. He did help to put things in prespective a bit, and pointed out that i really should consider my own home life a bit more, because they deserve just as much devotion too.

    Need i say that Alzheimer's is a very cruel illness, one, that takes away so much of the person it is with, and can try to take us as well, if we're not very carefull. Please try to take stock of YOUR life, it is so important that you do. It sounds like you are at your wits end and don't quite know what to do for the best.
    If your mum could understand, reason and make decisions She would probabley say to you ' Helen get some rest, don't wear yourself out like this just for me, wipe your tears away and put yourself back on track' because as much as you love her, she still will love you no matter what. Nothing will ever change that!!!!!

    You have to make the decisions for her, with her safety in mind and in your heart know that you did the very best you could and even more, by the sounds of it. Its not failing, or giving up, its called moving forward.

    I hope that this has helped a little bit, and if you can find the time just take a look at the situation as if it was happening to someone else, what would you advise someone to do, that is the way. You have a good heart, don't let it break too much, your dear mum wouldn't want that!!!!!!!!

    Take care helen, Kindest regards,
    Love Louise xxx
     
  5. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Helen,
    Your devotion is amazing, and your predicament dreadful. Unfortunately, you can't win in this situation without some compromise, and you need to consider what you owe yourself and your husband, too, not just your mum.
    I hope you get some respite very soon, and that someone will help you with an ongoing careplan from which you will all benefit.
    Best wishes, Carmen
     
  6. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Helen
    you have got too have some help,it's not fair to your husband and not fair to you.To me it seems that the Social worker is the key,you must shout loud and clear that you cannot go on any longer.
    Have the assesments been done for mum and YOU,IS THERE A CARE PLAN IN PLACE?
    Helen please don't let SS get off from providing help.
    I have just won a battle for funding sessions from SS,but I played hell up to get them,you can too!
    Please contact SS NOW
    THINKING OF YOU

    Norman :mad:
     
  7. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    #7 Mjaqmac, Feb 2, 2005
    Last edited: Feb 2, 2005
    Dear Helen
    You are exhausted and depressed with a grieving heart.

    Please take respite as soon as you can and spend some quality time without guilt with your husband. You owe yourself that big time!

    You are a fantastic and devoted daughter, but you are only human and have limits like the rest of us. Recharge your batteries and take some time to think, it may not yet be time (or ever!) to put your mum in a home, if you get some help you may well manage to carry on, but the most essential thing for you now is a break from mum. Let the respite home care for a few days and nurture yourself, she must be a wonderful mum for you to show such devotion, and wonderful mum's don't want their daughters to kill themselves on their behalf.

    It's amazing how a few days rest from a situation can bring around a different perspective and new energy.

    Good luck and congratulations on the fabulous care you've given your mum. It takes a very strong person to do what you have already done, that person is still inside you but she is tired and you need to rest her before you can bring her out fighting again. You won't let yourself down Helen, you've already proved to yourself you have amazing coping skills, but exhaustion is your worst enemy at the moment. Nurture yourself for a few days as you have always nurtured your mum.

    I waited for a long time on the CPN getting me a suitable respite home, in the end I went out and found one myself. Maybe you could make a few of your own enquiries.

    Nothing you are feeling is unusual Helen, everything you described I have felt myself from the guilt to the hate to the overwhelming love and despair, a professional told me this is known as carer's syndrome. Rest is essential now Helen, take those amazing skills of yours and think about finding a respite place yourself for mum, one that makes you happy, none are perfect but you really need it now. I fretted about my mum going in and went down to find her singing to Elvis records! You never know til you try. And if she's in respite a few days and you're unhappy you can always take her home. Nothing is written in stone Helen, you will always be in charge of mum's wellbeing, no one can ever take that away from you.
     
  8. Jude

    Jude Registered User

    Dear Helen,

    RESPITE required immediately. Followed up with rolling respite to give you time to regroup and plan ahead.

    Take a break and go and check out some care homes. Even if you decide not to go with that option immediately at least you will have some choices up your sleeve for later.

    You absoutely need to have a rest before you have a total breakdown.

    Thinking of you.

    Jude xx
     
  9. HELEN

    HELEN Registered User

    Jul 16, 2004
    36
    wales
    Hi All,

    Thanks so much for all your messages. Sorry for my outburst . I had a good nights sleep last night & feel a bit better. I didn't get any messages from her carer so presume she went to day centre ok. Mum does go to day centre 3 times a week, when i try to catch up on my own housework & sleep.Though there always seems to be phonecalls & appointments to arrange connected with mum . I also have a carer to stay awake with her 2 nights a week. Family try to help out on weekends during the day via a rota that we share which means i get time off between 11am & 6pm on either saturday or sunday. So really i shouldn't complain i'm just not good without sleep.
    Sheila i did seriously explore the idea of moving in with mum but couldn't due to finances. Due to a fixed mortgage on my house i would have had to pay a penalty for early redemption & not able to transfer mortgage or remortgage due to me giving up work to look after mum. I no longer have proof of earnings to obtain new mortgage & not enough equity in my house to buy something smaller without a mortgage.Could have used money from mums house to buy somewhere but then would not have been able to raise the money to give siblings their share of the equity when something happens to mum & could not face the idea of being forced to move again at such a bad time. The style & location of my house is not really suitable for mum to live with us. would cause as many problems as going back & fore between both houses.
    However i had some good news today. Mum's s/worker rang me to say she has arranged respite starting next week at the local emi hospital where mum attends daycentre. Its for two weeks (two whole weeks !) & will then be on rolling rota. Probably about 8 weeks between respites but may be a bit less. I'm really lucky as places at the hospital are much sought after. I think mums outbursts of aggression & falling out of bed , wandering & other health problems swung it. She'd just received a report that mum had caused problems on the ambulance on her way to day centre. Hopefully they'll be able to assess her & find a solution to her wandering at night & falling out of bed . I must say that mums social worker is very good & always chases things up straight away & gets back to me very quickly to update me if i do ask for help. When I first agreed to carers they were arranged in days. I must accept i have to look outside the family for the help i need. For now i'm trying not to feel guilty about accepting the respite as i know its for the best & i'll be able to give mum better care when i'm rested.
    Thanks again for all your support & advice it really helped .

    Take care all

    Helen
     
  10. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Dear Helen, so pleased you feel a bit better, don't ever feel you need to apologise for a rant on here!! Thank goodness they are sorting the respite, enjoy your two weeks, push for it more often then every eight weeks if you can. Glad to hear you are delegating, it's the only way. We had a wonderful SW too, treasure her! Hope you didn't mind my asking about her coming to live with you, just wanted you to explore all avenues which you obviously have. Take all the help you can get, you and your hubby have a right to a life too. Your Mum would say this to you if she could, but the fog of the illness stops all the things she has in her heart getting through. I know this, because when that fog lifts occasionally, you get that special something that says, "here I am, I was here all the time, just couldn't see you thats all." least, thats how it was with us, hope you get those moments too? Love She. XX :)
     
  11. Jude

    Jude Registered User

    Dear Helen,

    Great news about the respite! I'm really delighted for you. That should take the pressure off no end. Having a few hours here and there is okay, but there's nothing like a real break to enable you to recharge the batteries.

    Jude
     
  12. HELEN

    HELEN Registered User

    Jul 16, 2004
    36
    wales
    Dear Jude & Sheila

    Thanks again for your support. It makes such a difference when the advice comes from people who really know what they are talking about & have been there. I didn't mind you asking about us moving in with mum Sheila .

    Wednesday can't come soon enough & because of all your advice i don't feel guilty saying that any more. Just the thought of it means i've got more patience with mum. I've got a calendar & highlighted the respite on it & also a planned night out to a musical in july with friends(carers night). I hope to have more highlights on my calendar but have made a rule that they have to be something i enjoy but that brings me into contact with other people. Even if its just having my hair done. This is to stop me feeling isolated & remind me i do have a life of my own. Its also something to look forward to when i'm hanging on by my finger tips looking after mum. Hopefully i can strike a better balance between my welfare & mums. It should also help me to having something pleasant to talk about & to take some of the pressure off my husband to be company for me. Any big gaps between highlights will serve as a warning i might not cope. Hope this helps me & hubby & mum if i'm happier.

    Mum had a tough day yesterday & after having to pay her to watch the tv & then stop her pouring water down the back of it i finally go her to bed. Only for her to fall out again so i had to call an ambulance at 3:30am to get her up off the floor. S/worker is trying to sort this problem out but has been told they no longer issue bed rails incase person tries to climb over them or gets trapped. So i left mum bruised & tired with my sister & i'm going to try to grab some sleep before i go back at 18:00.

    Thanks again for all your good advice

    Take care all

    Helen
     
  13. HELEN

    HELEN Registered User

    Jul 16, 2004
    36
    wales
    Just to clarify, i didn't pay mum to get her to watch the tv,I had to pay so i could watch the tv with her. Though on second thoughts i'd try anything when she won't settle . ;)

    Helen
     
  14. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Brilliant Helen, you sound much more positive now! You have stopped letting the illness rule you, and started to rule it, a bit more. :cool: Of course you will still get hiccups, that's the nature of the beast, but you now have an action plan, - with treats! ;) I used to love a massage, booked one for the respite week quite often, felt like heaven, especially as I had a chance to sleep that night too. :D Do hope they sort this bed lark out for you soon, the only other thing is to put the matress on the floor so she justs rolls out rather than falls. :( Love She. XX :)
     
  15. nikita

    nikita Registered User

    Jul 31, 2004
    92
    falling out of bed

    my gran also keeps faling out of bed and wandering in the night, she is in a residential home and has been sleeping on a matress for the last 3 weeks at long last she is bruise free so it must be working
     
  16. Jude

    Jude Registered User

    Isolation

    Dear Helen,

    I've found that one of the worst things about caring is the isolation and lack of communication with other people on a daily basis. There is no fresh input, so when you do actually get a rare moment to socialise, you have absolutely nothing to say - apart from talking about dementia.

    You are absolutely right to choose activities during respite that give you maximum contact with other people and planning ahead for such meetings. As Sheila says, it helps to stop the 'out of control of my own life' feelings and you can begin to reclaim your 'self'.

    Roll on Wednesday.......

    Jude
     
  17. HELEN

    HELEN Registered User

    Jul 16, 2004
    36
    wales
    Hi all,

    Well i've done it, mum has been in respite since yesterday evening. Carer had problems getting mum ready for day centre yesterday as mum was aggressive ,though she didn't know she was going to respite. Was advised not to tell her .So by the time mum's case was dropped of at hospital i was completely drained. Ambulance picked mum up same as usual & when i spoke to day centre they advised mum was fine & they would take her to ward at end of day ( same hospital). This saved me the trauma of taking her there myself. Rang ward last night & she was drinking tea & chatting to fellow patient at 9pm . Normally likes to go to bed before then at home. They reassured me there had not been any problems . Took me until 5am to wind down & sleep. Feeling better today. Rang ward again today & advised no problems during night they were aware of (other shift) & mum napping in chair. Hadn't asked about going home, which if i'm really honest made me feel a bit redundant, though i'm glad she's not distressed . They did say she was naturally confused when she first arrived & wore herself out but seemed settled now . They may just be protecting my feelings but either way i trust them to take care of her. I've been advised to wait until weekend to visit so i'll keep you posted.
    I'm starting to relax & managed a whole hours conversation on the phone tonight without any interruptions. Got to speak to a friend i've not spoken to for months & catch up on news.

    Take care all

    Helen
     
  18. Jude

    Jude Registered User

    Dear Helen,

    Well done! You've now got a fortnight to have an absolute ball...!

    Having made a giant leap and done it once, future occasions will not be so fraught with anxiety for you.

    Jude
     
  19. storm

    storm Registered User

    Aug 10, 2004
    269
    notts
    Dear Helen, so glad things are working out so well for you ,reading your posts have made me realise i should try respite, in your first post you sounded just like i feel now and then reading your last post so positive thats how i want to feel.Hope things keep on running smooth. love storm
     

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