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  1. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,279
    Female
    Blackpool

    Hi Dutchman
    I remember when we first got Mums diagnosis4 yrs ago alzheimers latter stages. I'd known for probably 2 years prior and things then fell into place that had happened probably 3 years before that.
    The visit to the memory clinic, and then a dementia nurse calling round regularly made me feel more secure at last someone to discuss things with at that stage Mum was quite aggressive and difficult to care for They started Mum on Trazadone to try and calm her, make her less anxious and after a few months told me that was it I was to refer back to our GP if we had any problems they couldn't do anymore for Mum. I had never felt so alone in my life and petrified of how I would cope and then I found Talking Point somewhere I could discuss all my worries fears problems and someone would listen and help.None of this is your fault we have to get a diagnosis so we can prepare.By posting on here you definitely get the support we all need.
     
  2. Dutchman

    Dutchman Registered User

    May 26, 2017
    441
    Male
    Devon
    Thanks for replying. I know it's not my fault, but my wife is still in complete denial over her condition and to reason with her just leads to more confrontation. We waited so long for her permission to drive again and now it appears she's not going to be able manage going out on her own as changing gear is confusing and make for dangerous problems. I'm really thinking of us getting an automatic now as the rest of her driving appears ok. Also, I'm expecting a health diagnosis for myself that could be grim which could result in not being able to drive for a while. What a mess!! I'm writing this at 4 in the morning as worrying is keeping me awake. I don't want this aggravation and worry and although people are sympathetic and kind you're really on your own with this 24/7 and I don't want it any more.
     
  3. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Dutchman I know there's nothing I can say to make you feel better right now. From experience all problems feel much worse and overwhelming in the wee small hours of the morning.

    I hope your diagnosis isn't what you fear and that you are once again fighting fit very soon. Dementia doesn't allow for the carer to be anything other than 100% well does it!

    Certainly an automatic car could be a way forward, but that has to be a considered purchase. The bottom line has to be whether it is going to be safe for your wife, yourself and others if she is on the road.

    Would it be helpful to try a test drive of an automatic some where safe, like an empty car park first thing one morning. I know there won't be many car dealerships wanting to be that obliging, but is there a friend or family member who drives an automatic who could let your wife give it a go? Actually maybe a dealership would be obliging, they want sales after all and must be used to people switching to automatics for various reasons.
     
  4. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,612
    Hampshire
  5. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Hi Marnie

    Mum is more alert which is great and a bit aggressive again, but now seems pretty much incontinent and almost immobile. Mum can walk a short way with two for support, but it really isn't enough or improving. The pneumonia really has knocked her for six!

    How about you. I read your post about the LA home, it sounded good. My fingers are crossed for you as and when you feel that step is needed.

    I actually nipped back to have a moan about me. I've had earache for a few days. I went to the pharmacy yesterday and was told they could not suggest anything as I have pain. I needed to see a GP.

    I was really lucky and got an emergency appointment this morning. It's good old ear wax and I need my ears syringing. I was prescribed drops and told to make an appointment for the practice nurse to get them syringed next week. Can I do that no, the nurse has no appointments for next week and no appointments I can book for the forthcoming weeks. The receptionist suggested the NHS treatment rooms and gave me their number. I've called them. They have no vacancies up to December and the December list isn't open yet so I cannot make an appointment, I'll just have to keep trying. December!!! I hope the drops clear the wax else I'll be on pain killers for weeks to come. I know the NHS IS stretched, but wow! X
     
  6. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,612
    Hampshire
    Sounds grim Lavender. To me it feels very much like the NHS is close to a big crisis, based on what I saw in hospital for 4 weeks recently with mum, plus how difficult it is to get an appointment with the GP, nurses, etc. Even the district nurse visits have reduced, even though mum has this gaping wound that needs dressing! They were coming three times a week, they came on Monday and said they would next come on Thursday. Unfortunately I wasn't here and the carer didn't know that I didn't have many dressings, so had to call them today and ask if they could drop some off. Was told they could leave them at the surgery so that I could collect - how?! If I run out, then I will call them or 111 for a nurse to come and redo. I don't mind doing it, but not leaving me the things I need makes that rather hard.

    I emailed the SW this morning and she called me back soon after. I had a long chat with her and for the first time, her comments about mum needing a high level of care now, and me needing to watch my own health, made a lot of sense. I am going down with this, I can feel it. I am not sleeping as well as I used to, and wake up with a huge feeling of dread. I find it hard to get myself out of bed and leave it until the last possible moment to get breakfast, meds, etc., done before the first care call. I feel hot and tired all the time and very, very gloomy. And then there is all the changing and cleaning of mum once the carers have gone for the night. Mum still saves everything up for me after they have gone! I know it's not her fault, but, by God, it's hard to do alone.

    I guess this is how depression starts. Have never, ever felt like this before. I think it's just a matter of time now before mum goes into a nursing home. All I need to do is start the process with SS, when I'm ready. Well, I guess I'm ready now, so not really sure what I'm waiting for.

    It will be hard, it will be sad, but I think it's time to regain my life, after two years of sheer hell. 91 with advanced dementia, immobile and doubly incontinent, versus 54, healthy (just!) and still some life to live, I hope. I just can't give up my life and health for this any more. Dementia has won.
     
  7. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Marnie I wish I could give you a hug in person, you so deserve one right now. It does sound like the time is right to seriously think about homes and the LA one sounds particularly good.

    You know I've issues around the home mum is in, but there are so many positive posts about care homes, Hillybilly springs readily to mind, her mum's care home sounded wonderful, Lady A's experience of homes was equally good.

    I recognise how you are feeling now, it's very similar to how I felt this time.last year. I should have called time on the 24/7 sole carer role a long time before Hammergate as I think of the incident which made me call the police happened. I thought I was so strong and I thought I could manage. I'm arrogant enough to say I am strong, but I've had to accept that it's not about our strength, dementia is like a tidal wave, it just sweeps its way though regardless. I do think there comes a point when the impact on our own health is greater than the benefits to loved ones of the care we provide. That's not a criticism and if it is its a criticism me.

    Considering all the months mum was in hospital I really wasn't expecting to feel much about her transferring to a care home. It weirdly knocked me for six and I hated it. I felt I'd failed and like I was letting mum down, it was so stupid, but I did. I've pushed on through that now. There is something to be said for having the staff on hand to help mum to the toilet and to have them do the inevitable clean up. It's great that they help her from chair to bed etc. I can help, or I can let the professionals do it and as I've never done a lifting and handling course mum is probably better with them doing it than me.

    I guess I'm learning to accept that mum lives in a care home and to see some positives. I do see negatives too, I won't lie to you, I have issues with the home which mean I would like her in a different home, but that's the point I guess, unless I'm having a moment if real stupidity I know that given mum's health at this point in time a care home is best. X
     
  8. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    @Marnie63 @Lavender45
    I read your posts and the care you are giving. I cross everything that when I get to the same place with Mum I can do her as proud as you do yours.
    You show such strength and rational decision making each step of the way.
    Thank you for sharing I learn so much from you. XX
     
  9. rosy18

    rosy18 Registered User

    Jul 23, 2016
    1,279
    Female
    Blackpool
    Lavender and Marnie sending you both a huge ((hug)) xx
    I have just increased my Mums care at home to 4 hours daily. I know it feels like such an invasion of one's privacy in your own home but it's the lifting up and down and trying to keep Mum a little mobile that will be made easier with the help of the carer. They are really nice and Mum after a very rocky start with them now doesn't seem to mind them coming so the gradual increase of care seems to have worked. As long as Mum knows I'm hovering around she's quite contented with them even though she doesn't always know me she still wants me around.

    Dollybird hope your Mums aggression doesn't escalate too much. I know how frightening that can be and trying to defend yourself isn't always easy.
    When my Mum had her aggressive period I had to remove all objects that could be thrown or used to hit me with. I'm relieved to say that doesn't happen now but a little aggression can still creep in at tablet and toilet times. Just make sure you stay safe. It's just so sad to witness such behaviour.x

    Hope Wednesday is kind to everyone xx
     
  10. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    Bless you thank you for kind words. I’m lacking emotion with it all at the moment and just trundling along. So really managing ok, I anticipate woolly bottom lip soon when reality hits. X
     
  11. WORRIER123

    WORRIER123 Registered User

    Oct 1, 2015
    1,174
    Hello Ladies
    I have had a nightmare trying to post.
    Well what have I been up to, several colds, aches all over - I wonder if it was all the lifting I used to do. Today princess Alice hospice came to take some of the furniture as I needed to de clutter.
    Boyfriend jacked in the awful job and been volunteering in the parks and ponds and loving it
    I’ve been ok. Still think I could have done more for dear Dad, I know I did all I could, the arguments with social service and GP.
    I took some old books and cds back to the dementia activity room at the hospital Dad was in. Got there ok, went up in the lift and balled my eyes out then ok. Saw one of the nurses and he asked how Dad was, balling eyes again. Then saw a few more nurses who knew and were great.
    I hope you are all keeping well and looking after yourselves says she.
    Xx
     
  12. jorgieporgie

    jorgieporgie Registered User

    Mar 2, 2016
    1,985
    YORKSHIRE
    Evening Ladies, I have just caught up with the post been a bit low the last couple of weeks but on the mend now.
    Marnie a big hug for you, you have been wonderful coping with everything but you need to think about your health now.
    Dementia takes it toll on all carers in time, I have never been so ill since I stopped caring and lifting as left me with problems to my back plus depression does hit during caring and afterwards too if your not careful. If your seeing the signs its time to think about a CH, you will be there all the time and be your Mum's voice and still caring just like Lavender but you will be able to have some sort of life too.
    I know I was lucky enough to be able to keep Mum at home with me, but I only had a few Months of her been as bad as your Mum is now before she passed away.
    Lavender how is your ear, have you tried going for Chinese acupuncture they clear your ears with candles or something like that, fancy having to wait to get them syringe, that's terrible. Hope you Mum is comfortable too, its taken its toll on her but at least its letting her rest instead of always been on the go.
    Worrier nice to hear from you, I was thinking how you were getting on, seems like your like me up and down and tears just flow when you least expect it.
    Was thinking about last year at this time and what we were all going through, I sometimes wonder how we coped but we did and had a good team on here through our tears and laughter, the aftermath of it all as scared us all in someway but I am sure those scars will mend as time goes by. I know the pain of losing my Mum will never fade, its left a big void in my life which nothing will fill but hopefully with time it will get easier.
    Rosy hope your and your Mum are ok. I will be in Sunny Blackpool on Saturday with the grandchildren, but only on a day excursion, I would have loved to meet up but they want to be on the rides and everything. Maybe next time I come over without them.
    Aisling I do hope your ok and taking time for yourself x
    Hillybilly, LadyA and all the newbies and anyone I have missed hope the weekend is kind to you all.
    Big warm hugs to all you carers and keep talking it really is a god send this site. xxx
     
  13. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,947
    Ireland
    JP @jorgieporgie - it's coming up to the year's anniversary of your Mum's passing isn't it?
    This was your thread, you started it and we all joined in and so many of our Mums and Dads have now gone.
    What a year.
    You, @WORRIER123, @Harrys daughter, @MollyD, me. Probably others I've overlooked, sorry.
    Group hug and I'm sure all our parents are living it up and smiling over us.
    Plus of course everyone who has lost their loved one, parent or not, whether on this thread or not this last year.
    Or even not this last year.
    I shall stop digging now :D x
     
  14. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,612
    Hampshire
    @Lavender45 and @jorgieporgie - I hear what you both say, loud and clear, but I really, really struggle to break the tie. I think it's a combination of being so close to mum and not wanting to 'give up', having done two years of this now. Only two years, it doesn't seem such a long time, but so many things to deal with, so many horrors, so much hideousness related to this awful, awful illness that I wish to God I'd never had anything to do with! But here I am. I've had double up visits by carers today, I have three visits a day, just can't deal with the thought of 4 - three is bad enough! This has helped, I feel better, because I haven't done any of the 'hard stuff' as I now call it. But dementia still doesn't give me a break, as mum is now regularly staying dry all day and then a few hours after the last care call, the floodgates open. It's not her fault, poor mum, but very bad timing for me. Mum shouts for me a lot when the carers are doing their stuff but I stay away. In fact, today I went out and did a few quick jobs in the garden while they were here for the morning and afternoon calls. Fresh air, I crave fresh air! It made me feel better. Maybe this walking away, even for the hour they are here, is a small start for me in breaking the ties so that if things do become too hard to manage here at home, I will find it easier to make the break and find her a place in the home. The SW calls me regularly. They have agreed funding for home care until the end of November, I suspect that's because of the high care needs and therefore the high cost. Not sure what happens after that if I still want to carry on with mum at home. It might be that it would be cheaper for them to fund a care home! I think SS are being very fair in all of this, I can't fault them.

    JP - I'm sorry to read of the toll that caring took on your health and wellbeing and I hope that in time you do feel better. I am trying hard not to damage my back and am being careful when moving mum around, but I guess I won't know the real effects of all of this until it's all over.

    Does anyone hear from Molly? I hope she's OK.

    Rosy - good to hear that your mum accepts the carers and hopefully more hours a day will help you too.

    Best wishes to everyone else. I am so not looking to the long, dark, winter nights. Somehow it makes everything seem so much gloomier. God, I so want my life back now, have given so much to this damn disease. I've given up my job now. I said I'd never do it, but I just can't cope with that on top of everything else. And yet, I don't want the disease to beat me. The harder it gets, the more determined I become.
     
  15. gene genie

    gene genie Registered User

    Apr 26, 2017
    178
    This sounds just like my life right now, feel so selfish but I Want A LIFE, Dutch man, it's so difficult isn't it. I know how you feel my mum keeps telling me that you are not going to run my life I'm fine, but got up this morning to find that in the night she had got up and made tea in the kettle. No answers just sending love n hugs x
     
  16. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Good morning everyone.

    @Marnie63 I think I understand, you do what feels right for you and your mum. We are behind you all the way. X

    @jorgieporgie acupuncture eeekkkk noooo I couldn't, I'm petrified of needles. Even being in the same room as one makes me twitchy. They'd have to strap me down to get even one needle in! It's a very good thought if I weren't such a wimp about them. X

    @gene genie I've been through the you're not running my life phase and it's so difficult. I found parenting a parent very hard, not helped by my mum's resistance. It wasn't an easy time. You have my sympathy coping with it as you are now. I wanted my life back too. It's overwhelming caring for someone and feels so much harder again when that caring consists of daily battles just so you can do the right thing by your loved one. X

    As to my mum, she's up and down a bit. She's still not mobilising more than a very few steps and much of her aggression has vanished. We have a meeting with the social worker on Tuesday to review things. I suspect at that point the one to one will be cancelled. That will leave mum in her room alone for most of every day as she's refusing to go into the lounge. That won't be good, but the one to one costs a small fortune so I can understand why they would want it stopped. The 117 aftercare is also paying a premium to have mum in PC as it's a challenging behaviour home. The social worker told me mum would be moved somewhere cheaper if her aggression abated so a move may be on the cards. I've mixed feelings about mum moving, PC has not proved to be a very good home. I would love mum to be closer to home, but what if the next home is worse in their care for mum? More than a bit scary, but for the moment beyond my control. X
     
  17. Pollytickle

    Pollytickle Registered User

    Nov 15, 2015
    760
    Morning...

    I managed a couple of days to visit Mum in the week but have once again fallen foul of d&v :( Can't help but think my body is trying to reset to default after using so much effort to contain the overload from running at critical, & it's venting pressure from every safety valve at once :confused:

    I am even more convinced that Mum had another TIA ( mini stroke ) about eight weeks ago, as she too has become immobile & needs this huge contraption just to stand her up. Consequence of being in a wheelchair is her developing sores so ended up being bedridden, thereby keeping her off her touche to allow it to heal. The benefit of the chair is being able to wander between the various lounges for different views of the outside world & also out into the garden.

    Mum has far less stress around her care - whether she acknowledges that or not - than there would have been if I had insisted she come home. There are all sorts of gadgets & gizmos available to them that just wouldn't fit in a domestic setting, designed to help make Life comfortable for my mum...why would I not want that for her. If we were still in her home the whole mother & daughter relationship would have been gone forever, to be replaced by feelings of resentment & confinement, just waiting for the inevitable for either of us.

    I well recall a nurse from the Dementia Team in the hospital asking me if I wanted to remember Mum as my mother & smile, or as my mill stone & resent every dirty bedsheet. Made me think ... long ... & hard...
     
  18. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,540
    Ireland
    It's sad, but so often true, @Pollytickle. We try so very hard caring for our loved ones, but, as you say, the equipment needed, or the space needed, or the number of people needed. For my William, it was simply that he needed the structure, and he needed male carers on hand, and the company of others. I couldn't provide that. And we were able to have a much better relationship too when I wasn't trying to do everything, very much against his will.
     
  19. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    Arrrhhhh. Unbelievable!!!!

    Evening all, I'm really bemused, frustrated and concerned!

    As I've said my mum isn't mobile anymore apart from a very few supported steps following a bout of of pneumonia which has also removed about 99% of her aggression. It's sad and it upsets me to see her so passsive, but that's where we are at.

    I speak with the home every day if I've not visited, though getting information out of them is difficult. Yesterday I called and mum had had a quiet day, had eaten and drank quite well and that was it. Today I've called and it turns out a mental health nurse saw mum on a routine visit yesterday. A standard visit on a Sunday seems odd, but hey ho. The nurse has determined that mum needs a medication review to see if further medication can be given to calm mum more.

    Poor mum, her aggression is minimal now and they want to try to give her more medication. To my mind with her aggression massively reduced they should be giving less not more. Most of the residents in mum's unit seem to be bed bound and quiet. I know the staff are entitled to work without being attacked, but without the aggression mum was displaying her one to one will be withdrawn and it feels like they are wanting to replace that support by medicating mum more into some sort of zombified stepford resident. I've never objected to mum receiving medication and I've pushed her consultant long and hard to get mum to an optimum level of calm, but this doesn't feel right.

    I've a meeting with the social worker tomorrow and I'll be discussing this with her. I've thought long and hard and I'll be pushing to get mum moved. Too many things are wrong in my eyes.

    I cannot remember if I posted this, but last Monday we had a bus strike here so I booked a taxi to get home rather than having to take a massive detour to get home. When it was time for me to leave I went to find mum's one to one. I had a look in the office, there were 3 staff in there. No one was in the dining room, but 4 staff were sitting together with take away in the lounge with no residents in sight. I left at 3.30, I cannot see that was their mealtime, even if it was 4 all together seems wrong. No one was observing the residents, it's was just time out. If a resident fell presumably they would lie there until the take away was finished or someone came out of the office. It's a challenging behaviour home, this cannot be right.
     
  20. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,612
    Hampshire
    Lavender, that doesn't sound good at all. The contradicting reports must drive you crazy - how can they lie like that? Is it because they couldn't be bothered to find out exactly what happened - so make it up?! I hate to say it, but it sounds like they want the medication so that your mum can become like the other 'very quiet' residents?! Sorry, don't mean to wind you up, but I experienced this once when mum was in emergency respite in the Summer of 2016 (the one and only time she has been in a home) and was given Risperidone by a local GP they had called in after only three days, because she "was not sleeping at night"! But, as you probably well know, I am possibly one of the most cynical people as far as care home care is concerned, so it's hard for me to find good reasons for what is happening in that place. Do you think it will be easy to move mum, and is the other place still a possibility - the place you had better feelings about? I really hope you manage to sort things out, either with the current place, or with a move to a new home. But, no one should have to watch over and monitor these places, should they???

    I managed to have a break today after the carer arrived and the district nurse had been. This particular nurse seemed a bit more 'forceful' in how she packed mum's wound, I do it more gently, but then it is my mum! Went out for a wander around our local and very large M&S, was offered a taste of some new gin they were promoting - did wonder for a fleeting moment if a bottle of the stuff would make me feel any better, but decided it probably wasn't a good solution. Then popped round to one of my neighbours for a cuppa. Mum seemed tired later in the afternoon so I put her back to bed and the carers got her up again later for some dinner. She still isn't eating the amount she used to, but probably the right amount for her current level of activity. I'm going to keep her up a bit later tonight to see if that gets her off to sleep a bit better. Mum does a lot of tossing and turning in the hospital bed at night so whenever I wake up I always go to check on her position. She must wonder what on earth she's doing in such a tiny, confined space, after her lovely double bed. It really is a turn around to a child like state, now that she's sleeping in an adult sized cot, and wearing adult nappies. I'm really pleased she has no idea of her predicament.

    I've got one physio coming tomorrow to see mum and then two of the NHS ones on Wednesday. I suspect they will be cutting the support now that mum's 6 weeks are up. It's odd that the private one said mum has made amazing progress in two and a half months, considering her age, yet all I seem to get from the NHS ones is negative vibes. Though I guess you could say that perhaps one lot are being more realistic - who knows! I will keep trying. The carer and I had mum standing again today, holding onto a framed stool. She gets tired very quickly doing it, but while she seems to be 'livelier' by the day, I am not giving up on the possibility of some more progress.

    I am starting to feel just a tiny bit more positive about all of this, which is just as well, as only a few days ago I think I was on the brink of slipping into some kind of depression. I hope I've managed to steer well clear of that.
     
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