Hi i've had a bad couple of weeks and decided to join you all

Discussion in 'ARCHIVE FORUM: Support discussions' started by Sally Preston, May 14, 2008.

  1. Sally Preston

    Sally Preston Registered User

    May 14, 2008
    South Shields
    I've thought of doing this several times before but never got around to it, like many of you I am a carer of a parent in my case it is my mam. I am very lucky to have the additional support of my brother and sister, the last two weeks have been very difficult with my mam deteriorating rapidly and taking her first visit into the night in her night clothes along with her very frightened cat. She managed to find her way around to my house very distressed running from people she imagined were in her house. These people took several forms over the following days and appeared as soon as she was left on her own.
    Mam has up until now refused to accept her Alzeimers which was diagnosed last year, because of this we have no additional care going into the home and all three of us work. To say we were not prepared for this episode of increased care is an understatement.
    Following a trip to a very helpful GP mam has been referred back to the community team and we have also made contact with our local Alzeimers society.
    What I wanted to say is that for all you lone carer's out there you have my deepest sympathy, I do not know how I would have managed these last 2 weeks without sharing the difficulties and responsibility of caring for mam with my brother and sister.
  2. connie

    connie Registered User

    Mar 7, 2004
    Hello Sally, and a very warm welcome to TP.

    I cannot comment on the situation with your mum, as my caring role comes from a different angle, but I am sure you will find plenty of support from others in your circumstance.

    Thak you for your statement:
    So nice to see that you are able to count some small blessings, and think of others.
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Sally, welcome to TP.

    Like Connie, I care for my husband, so haven't had the same experiences as you, but there are many members who have.

    I'm glad you have the support of your brother and sister, and that your doctor is helpful.

    I hope you find TP as helpful as I do.
  4. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    Hello Sally, welcome.
    I look after my husband.
    I know from my experience there are some, strike that, they all on this site are wonderful. Please keep posting.
    Barb & Ron
  5. Margarita

    Margarita Registered User

    Feb 17, 2006
    #5 Margarita, May 14, 2008
    Last edited: May 14, 2008
    Thank - you I was one of those lone carer,

    I remember when my mother did something simula like that, my friend found her in the street wondering around in her night dress in the middle of the night looking for me.

    To see my mother like that was shocking , I could not believe what I was seeing or could not understand what was happing to her , all I new is that she could not live alone .

    I had no support from any close family , only had a brother who had his own mental disability to deal with so could not offer me any help with my mother as he also needed my support to support him, he did try , but all that did was to give him a relapse in his own mental disability.

    I did manage to get my mother mediation for last stages of AZ , which did help with those symptoms, but I don't feel it took away my mother being able to live alone at night time , because even with my mother living with me , she would still wonder around our home , going into room to room looking for me .

    No what you mean my mother 6 years on does not accept she has a dementia, only in the last 3 years has only excepted outside help from beside me .

    If I never took a stand , mum would of got so use to me doing all for her , she would of never except any help from any one but me.

    I was told the longer I carry on helping her , it became harder for my mother to except help from anyone even from my own teenagers. So I had to stand back stand firm, let someone else other then me take care of my mother .
  6. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Dear Sally,

    How sad for you. This is exactly what we experienced with my mum. Not in her nightclothes (as far as I know), but going out at night and knocking on doors, ringing friends in the night, etc. This is a sort of "deciding point" for you, and I don't envy you the decision. Do you try to get care into the house at night - I was told it wasn't available, private care about £120 per night (totally unaffordable). Locks on the doors to keep her in, I felt that was cruel, I might reconsider that now, investigate time switches, I didn't find any information, and the social worker didn't know of any. But still not ideal, and a worry in case of illness, fire etc.

    We "put" (yes it still feels like that) mum into a Care Home. We know she is safe, but bored out of her mind. Mum was sent to a psychiatric assessment unit and they said she needed 24-hour surveillance. I do now wish I had investigated alternatives to the Care Home. In fact, I am damn sure I should have done, cos I feel permanently guilty and I know everyone on this site will tell me I mustn't feel guilty, but I do. Every week I visit her, she is unhappy. She isn't so bad mentally that she needs to be in a home, she just needed restraint at night. No, No, I remember it wasn't just at night, it was in the day as well, she was eating breakfast at 7 p.m. and having her evening meal at 12 noon. Hey, I forget what it was like. Oh, gee, I am so glad I have remembered that. This post has reminded me hoe it really was.

    Anyway, Sally, this is probably not a help to you. Sorry.

    Obviously if your mam is running around at night, she needs some care in place, and I suspect it will have to be a care home. Do get a mental assessment done, preferably not just a quick 15-minutes with the GP (mum scored well on those), but a physical assessment on a psychiatric unit where they can see how she behaves day in day out for a while. Mum had six weeks in the hospital, the staff were lovely, she quite enjoyed the fuss made of her. But at the end of the period they said she had to have 24-hour surveillance. It didn't have to be in an EMI unit or anything out of the ordinary, just a home that was capable of dealing with people with Dementia, which I think most of them are now.

    She is on Aricept, and I have seen no real deterioration since she went into the home 9 months ago. Which means she knows who I am, I can take her out for a look round the shops (she is trying to buy false eyelashes and fake tan!), a run in the country, a pub lunch, a visit to my home for a cup of tea or for a meal.

    I haven't had time to do most of those, but I am taking a year out of work to give me the time to do it while mum is still capable of enjoying it. Not everyone can do that. But I can, and I must.

    Another 12 months and she might not even know who I am, so I have to do it now.

    Sally,make your decision as to what you do based on what you and your brother and sister can manage. I am sure you will do the right thing.

    Much love, and sorry not to have been of much help.

  7. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    Newcastle upon Tyne
    Dear Sally,

    Welcome from a fellow Geordie. I knew as soon as read "Mam" you would be from the NE. I am so sorry to hear about your Mam. Mine is also still at home and I know the next stage will be her wandering and getting lost - she can't sleep and gets up at all hours but so far has stayed put (apart from visiting her sister who lives in the same street at the crack of dawn).

    I have been through this with my Dad, who is now in a care home. He kept going out and getting lost and also falling. Mum used to keep the worst of it from me, but eventually she couldn't cope and there was no alternative. It comes down to safety in the end.

    Best wishes,
  8. Sally Preston

    Sally Preston Registered User

    May 14, 2008
    South Shields
    Hi Carolyn (my fellow Geordie)

    Funny you mention the use of "mam" I started with mother knowing few people use mam but then decided that it just didn't sound right for her.
    I'm in a bit of a fog I think this week, or that's what it feels like I can't seem to get my mind free from thoughts of what if this happens? and what comes next? is this just a blip and will things go back to what they were a fortnight ago? How quickly do we need to move mam in with us and can we cope.
    Mam has been showing signs for about 5 years but managed relatively on her own until she stepped out in front of a car this time last year.
    Luckily she wasn't hurt too much but needed a stay in hospital for a couple of days which was the begining of quite a deterioration.
    These last 2 weeks have seen a similar deterioration with no apparent reason for it.
    Has anyone had similar experiences.
    I'm sorry to hear you have had this with both parents Carolyn it's so cruel.
    By the way Sally is my user name I chose it yesterday after my mam re named her cat because she forgot what she was called and thought Sally suited her better. I'm a Geordie Caroline.

  9. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    Newcastle upon Tyne
    Dear Sally (Caroline)
    I know how you feel - when things take a turn for the worse your natural reaction is that things will get better. I don't think they really do with this disease, although they may plateau for a while. My Dad was at home for a long time while Mum tried her best to deal with him, and I kept out of things as much as I could because it's difficult taking that step from them being independent to dependent people. When he first went away last December I too was in a fog - just breaking down all the time. By a horrible twist of fate Mum got her diagnosis the same day as he went into his care home. Now they don't see each other - but that's a long story.

    It doesn't really get any easier, but you will get better at coping. It's a big step having your Mum to live with you - I really admire people who can do that. I work full time and have a very noisy, chaotic household with lots of people and partners coming and going all the time and Mum wouldn't be able to cope here.

    On a positive note, though, Mum has been prescribed an anti-depressant and today she says she feels wonderful and thinks she is getting better! That was after she asked if she was really my Mum because she thought she was a little girl.

    Please keep in touch.
  10. Sally Preston

    Sally Preston Registered User

    May 14, 2008
    South Shields
    Hi Carolyn

    Yes it's a big step having mam to stay she has always had a fear of going into residential care and long before there was any signs of AZ we discussed if the need arose her preference was to move into our house. I don't think either of us thought about AZ, I think we imagined maybe when she was a little frail in her 90s she is now 75.
    During her stay in hospital last year she deteriorated rapidly after probably the first hour becoming very disorientated, hallucinating and eventually on the 4th day she tried to smother a lady in the next bed with a pillow.
    Her admission after her brush with a car came 3 days after her accident in which time she was quite clear in her mind. The deterioration we think was from the stress associated with being in hospital. I don't think she would cope at all if she had to go into car.
    For this reason my husband and I are going to try as best as we can when she agrees to come to us, at the moment she wouldn't hear of it and still thinks she copes on her own.
    I'm realistic though I have a very busy full time job and am struggling now visiting mam before I start work and arranging meals at lunch time and going back round as soon as i'have finished, taking time off whenever I have to take her to medical appointments or this last fortnight to take care during her difficult periods.(I live around the corner to her my brother and sister live further away my sister pops in most days on her way to work and my brother comes weekends or when needed).
    If mam moves in we will need additional care which we are in the process of trying to arrange anyway into her own home.
    The realistic bit is that I don't know whether I will manage but
    if it becomes too much I will know I have tried and that will go someway to easing my guilt ( I hope) if she has to go into care.
    My mam has always given 100% to her family and I would not like to think we were not there for her when she needs us, a thought shared by many I am sure.
    Whatever happens I know my family will support my decision and that helps.

    Thankyou for your reply it helps, your situation sounds so much more complicated I hope you have someone to share the responsibility.

  11. andrear

    andrear Registered User

    Feb 13, 2008
    Hi Sally (Caroline)

    And Welcome to TP.
    I too look after parents, in my case, both mum and dad. Dad has dementia, and my mum is terminally ill with cancer. Both live at home and they are 45 mins drive away from me on a good day. I go every day now. I had to give up my job because my brother made it clear that he wanted nothing to do with 'dementia' and 3 years on he is still in my mind 'a waste of space' (sorry if that sounds strong but it really is how I feel).
    My dad is going through a very aggressive phase at the moment and I keep hoping that it will pass but he has been getting progressivly worse since January, and I can't see an end to the aggression.
    However, I am determined that I will keep them both in their own home until the inevitable happens, so I try to keep as strong as I can for their sake. Its not easy at all and has certainly affected my health. I can understand others wanting to allow their parents or indeed their loved ones to go into care homes and its taken a lot of deep and thoughtful thinking on my part to keep them both together.
    Dad also wanders, but luckily for me, he is afraid of the dark now and so it gives me some comfort that when I leave in the afternoon then the door will stay locked until the next morning.
    I wish you luck and I hope that you are all able to stay strong and keep together in this.
  12. Sally Preston

    Sally Preston Registered User

    May 14, 2008
    South Shields
    Hi Andrea

    Thanks for the reply, there are so many wonderful people out there, it's probably no help to you but i'd rather meet you than your brother you sound like a very caring person managing a very difficult situation. It's not until you log onto this forum that you realise how many people are caring for elderly relatives.

    I am sorry that you had to give up your job, although I moan about mine I would hate to have to give it up.

    I sympathise with you regarding the aggression my mum became very angry on the weekend for the first time and screamed at me like I could never have imagined, this was as a result of me trying to assure her that there were no midgets in her house and trying to persuade her that we needn't phone the police. I gave up trying to persuade her and took her for a walk to the fair to see if the midgets were there instead. By the time we got there she had forgotten why we had gone and we enjoyed a nice ice cream and a walk through the park. I'm sure you've been there and done that.

    The situation with your mam must be equally hard. After reading the story in the news of the couple this week who killed themselves rather than being split up after 60 years together, I can just add my admiration for the job your doing you must feel very down at times but please take time today to pat yourself on the back for a job well done.

    You've done your parents proud.

  13. Margarita

    Margarita Registered User

    Feb 17, 2006
    #13 Margarita, May 16, 2008
    Last edited: May 16, 2008
    Yes I also find that ( deterioration ) in my mother when she was admitted into hospital after she had a bad fall, but then when at home with me after a few weeks My mother has more clarity of mind , she seem to pick up .

    I also find that happen when she go into respite, when she back home with me she seem to have deteriorated .

    I find with my mother she needs a lot of stability staying in one environment all the time to stay on a platter .

    My mother was on mediation for late stages of AZ, when I started caring for her, I don't feel I could of done it without the meditation, because her symptom where to heavy for me to cope without that type of meditation

    So with meditation I would take her to Gibraltar for holidays with me , but as the disease progressed she would became more confused , very distressed with all the change of environment.

    I am no expert , but from my own experience with my mother & I know every one with a dementia is difference . I would like to say .

    If you did in the future consider that your mother had to go into care home I feel , yes your mother would became confuse , distress being they , but as time go on she get use to that new environment.

    Its a life , changing experience giving up your Job to care for your mother & your going to need a good care plan set up so you can have a break .

    If I am truthful with myself . If I new then, what I know now, I would never of given up my Job, Not saying that I regret it. Just back then in 02 I never had TP :).
  14. Sally Preston

    Sally Preston Registered User

    May 14, 2008
    South Shields
    Hi Margarita

    I'm hoping it never comes to me giving up my job, i'm not sure I could.
    We are hoping that mam accepts medication at her appointment with the Psychiatrist her GP is sure she will be offered, she was last year but wouldn't accept diagnosis and refused all services. Fingers crossed she now accepts more help from family.

    Trouble is she has forgotten her appointment last week with the GP so any discussion about appointments will come as a surprise and we may be back to square one. Here's hoping?

  15. Ditto

    Ditto Registered User

    May 17, 2008
    Cape Town

    My room is directly next door to my old dears room and as I'm a bit of an insomniac, I'd more than likely hear her if she left her room in the night.. However, I lock all the doors and windows and security bars at night and remove all the keys and put them in my room. God forbid what would happen to her if she was able to get out of the house in the middle of the night.... I live in South Africa and would more than likely never see her again... Phew! thank goodness for locks!

  16. Just thinking

    Just thinking Registered User

    May 7, 2008
    North west
    home help on board

    Hi Sally, I only registered on here a week or so ago as (like you) I didn't have time before but I'm glad I did as it gives you a good feeling to know others are in the same boat and can help with questions you may have.
    My social worker sent me a really good book so perhaps yours will if you mention it - a kind of 'carers handbook'. Also, ask about 'assistive technology' as that may help by having sensors placed in your mams bed or at the front door which alerts a 24hour monitoring service who will let you know if she's going out or wandering.
    My mum has a home-help going in twice a day now and it HAS enabled me to do the 'daughter things' with her again. My mum doesn't 'see the need' as she believes she can manage herself...but I just cajole her and she's ok with it. It's true you won't feel as though anyone else can do the job like you but it takes a little of the strain off and your Mam will get used to the different faces calling. Good Luck.
  17. Sally Preston

    Sally Preston Registered User

    May 14, 2008
    South Shields
    Hi Just Thinking

    It sounds as if your at the point we want to be at, we sneakily introduced someone from our local alzheimers association to mam thia week and am glad to say mam said afterwards that she had always been so against having someone coming into the home but if she had known they were all as lovely as this lady she would have done it years ago.
    This carer will introduce someone who will visit once a week and maybe sit and chat or take mam out. The next tricky thing is her agreeing to the referral I have just made to social services for a carer to go in and hopefully help with meals etc. while I am out at work.
    Unfortunately I suffered a mini stroke on Sunday the 18th and am due to see a specialist on Friday for further tests and treatment. I have kept this from mam and she thinks I am at work, while I am actually on the sick worrying myself silly about this latest turn of events, hence the reason I haven't been online all week.
    If it doesn't rain it pours!
    Never mind mam and I share a great sense of humour and we find we can always find something humerous in most situations, your situation sounds very much like mine, I hope you and your mum can still share a laugh together.

    Take Care
  18. Sally Preston

    Sally Preston Registered User

    May 14, 2008
    South Shields
    Hello Ditto

    Hello in South Africa i'm sure the sun will be shining over there right now, sorry not too have replied earlier i've had a bad week and this time it's nothing to do with mam. Unfortunately I had a mini stroke on Sunday which was totally unexpected and at the tender age of 48. My recovery is good which is expected with a mini one but I need to go later this week for assessment and treatment plan.
    While i was at the stage of not being able to move my arms and unable to speak, being a nurse I guessed what was happening I was actually thinking this can't happen I need to look after mam.
    The paramedic who was there within 6 mins and very nice said to me this is a warning it's telling you to slow down, if I could have spoke I would have said fat chance tell me how?
    But never mind on the bright side mam appears to have come out of the nightmare episode she was in and returned somewhat to how she was about 3 weeks ago, we are forging ahead trying to get some care in anyway and hope she accepts.
    She doesn't know what happened and i'm pretending i'm at work and keeping my routine as normal visiting before and after work when i'm really around the corner at home.
    Happy days
    Take Care and enjoy the sunshine.

  19. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Sally,
    So sorry to read that you had a mini stroke.
    I send you best wishes for the assestment and care plan.
    Best wishes

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