Two years to get this bad. What now?

Discussion in 'I have a partner with dementia' started by AL60, Nov 29, 2016.

  1. dancer12

    dancer12 Registered User

    Jan 9, 2017
    451
    Mississauga
    Oh my GOD. What to say, what not to say. So many questions, will they ever be answered. I believe so. when we are ready to hear the answer we will hear it. I'm so, so sorry. My heart goes out to you. Stay strong.
     
  2. margherita

    margherita Registered User

    May 30, 2017
    2,409
    Female
    Italy, Milan and Acqui Terme
    Al, I am so sorry for you, there seems to be no way out, because any decision is so hard to make.

    Hope you won't get offended if I tell you I appreciate your sense of humour, which seems to keep you connected to life and normality and somehow rescue you from despair.
    I wish you a peaceful night
    Maybe you are already sound asleep
     
  3. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi, my sense of humour has got me through many situations in life. I must admit I'm finding this one a good bit harder to see a brighter side but i'm getting through ok. I use my humour as a kind of shield to protect me from the harsh realities. We all have our own way of coping and this is mine. And yes im still wide awake. Al.
     
  4. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi. Good morning all. I felt better yesterday, Sunday morning, it's surprising what five hours sleep can achieve, especially in a bed that doesn't deflate, no, this bed will never leave me feeling let down. ;) (old dad joke). I woke up thinking how fast the last four and a half years have gone by. It lead to more thoughts about how much better I could have done things in the earlier days of her dementia, if only I'd known what was coming! I don't think I'd have done things much differently, perhaps more understanding and less anger. It's extremely tiring though isn't it, enough to try the patience of a saint some days, and I'm no sainto_O. I'm like the rest of us , just an ordinary person trying to make sense of things. Yes, four years plus gone in the blink of an eye. But that's the same for everyone isn't it. Funny how when you're young a year can seem forevero_Obut now! It's a bit like my journey home from Dundee. The first part of the journey took ages, the train stopping and slowing through the beautiful Fife countryside, lots to see as it ambled it's winding route to Edinburgh. The on the next part of the journey a bit faster, only slowing occasionally as I headed south. Yeah, everything goes south after a while, Only a few stops, many stations going past so fast you could barely see where you were but you knew that every one of them brought you ever closer to home. The trip is still enjoyable at this point and suddenly you realise just how far you've travelled on your journey. After three hours you start to get tired , especially as its getting dark outside and with less to see outside except your own reflection it even starts to get tedious. All you want to do now is be home. like life's journey though my home is really where I want to be.
    Sorry for the train journey analogy, I started this post earlier on Sunday morning and it seemed a good idea at the time. There isn't really a comparison between a life journey and a journey by train. After all there are things you can do in life that you can't comfortably do on a train:eek:. I was thinking things like washing and ironing, what on earth did you think I meant :rolleyes:
    A little good news from the care home yesterday, Sunday . My wife was comfortable and calm, sitting in the quiet room eating and drinking a bit more than usual. I didn't visit,.perhaps they'd persuaded her to take her meds, If I had visited I wouldn't have been able to get to see her anyway. No change there. I'm going to call in tomorrow morning, although I can't get to visit my wife, at least I can have a chat with the staff there. I might even get to see her gp. Right, enough rambling on for one post , time to get to sleep. I can barely stay awake for some times throughout the day then stay awake half the night. It's so unlike me, so, goodnight again. :)Al:).
     
  5. margherita

    margherita Registered User

    May 30, 2017
    2,409
    Female
    Italy, Milan and Acqui Terme
    I like it, Al.
    Unfortunately I do not know either where my train is going or how long the journey will last.
    Maybe I should learn to travel through life one day ( hour, minute) at a time.
    Good night.
    Hope your day was reasonably good and your night is peaceful.
     
  6. PalSal

    PalSal Registered User

    @AL60 Yes, looking back, I see that sometimes earlier in the disease I focussed so much on what was wrong instead of what still worked. I too have some regrets, about being so angry. It was a real waste of some fairly good years, but at the time, I saw the situation as so difficult taking over so many responsibilities and feeling like I was left in a lurch….
    But hey, I found my way, and for today I do the best I can. So glad to have found TP in 2011...before that I really struggled daily
     
  7. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi. Time for a short post before bed. It seems nothing has changed with my wifes severe agitation. Still not eating or drinking enough and still wanting to burn all my clothes. All along in my wifes dementia journey I've had trouble keeping up with the rapid changes in her condition. I think that the care home is having the same problem. They are now trying to arrange more in depth nursing care. They have this facility in the upstairs of the same building and there's also a room available. Sounds easy doesn't it . Nothing is easy. I've asked her social worker to try to speed things up . Watch this space.
    I agree with you Palsal, signing in to tp is the best thing I ever did, well, one of the best things anyway :). That's it for tonight, early night for once. Al. o_O
     
  8. Casbow

    Casbow Registered User

    Sep 3, 2013
    987
    Colchester
    So sorry that your wife is still so agitated when she sees you. My husband was very bad for a couple of years but once he settled in the nursing home, having raged in there for 6 months, he finally settled down and for the last year has been almost always, quietly happy in his own world. I can see that it has been a long while for your wife to be so (I'll use the word difficult) and it has been a terrible time for you. (Understatement.) All I can say is that she may suddenly quieten down and accept your visits, Dementia can change so quickly from one mood to another. Does she have Vascular dementia. which is what my husband has. I wish things could get better for you soon.x
     
  9. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi, another late one. I've been out with friends for a meal. , that's my excuse for tonight's late post. I must admit I have found it something of a distraction for a few hours. But I'm back home now, actually I got home soon after midnight but once again find myself wide awake . This is my third attempt at posting since Thursday, every time I try to have a quiet five minutes I get disturbed. So, here I am, the next half hour all to myself what can possibly go wrong o_O.
    I received a call from my wife's social worker yesterday. The funding has been approved and my wife will moved upstairs on Monday. That means she's moving to the nursing home. There's a hope that she can benefit from the nursing care from the mental health nurses, if they can encourage her to take her medication then maybe she will be a bit less agitated and hopefully start to eat a little . An awful lot of if's and maybe's, we can hope.
    Casbow, in answer to your question , yes it is vascular dementia. I could never really make sense of it, her bp was always OK, no history of Heart disease or stroke , it just didn't seem to add up. But thinking back to that evening when I returned from work and found her extremely agitated and confused as to my whereabouts I always thought that was the first time I noticed something wrong. Now I wonder if she had actually had a mini stroke. I can ask myself these questions from now until the cows come home and I'll never know the answer. It's irrelevant now anyway , nothing will change things now. Right, time to go , I'm tired enough now to attempt a lights out manouver and get some sleep. So goodnight :)Al.
    OK then, how do you spell, manoover? :):):)goodnight :rolleyes:Al.
     
  10. Rosebush

    Rosebush Registered User

    Apr 2, 2018
    1,471
    Hi Al, I've not posted for a while, my husband was admitted into hospital just before Christmas and then transferred to a care home on January 7th to be assessed. The first meeting is tomorrow, unfortunately I will not be able to attend but I will attend the second meeting on 22nd with my daughter, we are not self funding and I am hoping they will transfer him to a care home closer as I don't drive and every time I visit it costs me £20, the home he is in is about 20 miles away, do you know anything about the assessment? my husband needs a secure place as he will escape the first chance he gets, when he was in hospital he managed to get out and it took 6 hours to find him.
     
  11. dancer12

    dancer12 Registered User

    Jan 9, 2017
    451
    Mississauga
    Hi:

    Glad to hear you are the new man about town (socializing with friends). It will make a world of difference. I can see it in your posts already.:):):):):):):):):)
     
  12. Casbow

    Casbow Registered User

    Sep 3, 2013
    987
    Colchester
    The reason I asked is I find (or think) that vascular dementia symptoms can sometimes change and, I think in my husbands case the blood vessels that are damaged sometimes clear and there are changes (very small ones) in the way he is. I think I must be daft but sometimes he smiles and is well relaxed and loves me to hold his hand. Other times he won't look at me or take any notice of the fact that I am even there. I just wonder if I am being daft or if maybe it is possible for your wife to have moments of calm and a little recognition.( Maneuver!! According to spellcheck.
     
  13. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi. That did used to be the case. but it seems as things have progressed the spells of agitation have got closer and closer together. Until now when it's almost continuous . Especially when I'm near.. When I look back at my own earlier posts the periods of anger towards me were there a long time ago, but then it was easier to calm her down with distraction methods, not any more though. Hopefully the move to the nursing facility will help. Only time will tell. Al.
    Earlier this evening someone who shall remain nameless dropped a packet of crisps on the carpet, so tomorrow morning first thing you can think of me as, man Hoover's. Al.
     
  14. AliceA

    AliceA Registered User

    May 27, 2016
    2,234
    I too hope the moved to a nursing facility will help too.
    You have been going through such a lot, my husband has vascular, he always had/has low blood pressure too.
    alice x
     
  15. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi again. The move to the nursing facility at the home has gone without any problems. Even though the move was only upstairs I should imagine it could still be disoriantating. Now well just have to wait and see. The best interest meeting is to finally take place later this week, at least the picture isn't as bleak as that hospital doctor painted it. It's only to discuss covert medication. As they started that a few days ago this meeting is just a formality. So, for the moment, all good.
    In about half an hour from now I'll be setting of on my one and a half mile trek to my not so local, local. That's a three mile round trip with a bit of socialising in the middle . Tonight I can relax and enjoy for a little while , I might even have a drink or two while I'm there so for now , goodnight. Al.
     
  16. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,044
    Merseyside
    Enjoy your night out Al.
     
  17. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    347
    Sheffield
    My OH has vascular and I have noticed more aggression and agitation every 12 weeks there is no pacifying him he is just horrible and aggressive all the time and it is getting worse despite the medication.
     
  18. AL60

    AL60 Registered User

    Oct 14, 2016
    493
    Cheshire
    Hi. I know how you feel, I too thought that the medication didn't seem to help either. And I don't know what to say that could help. We had a social worker To Help and our gp has been brilliant and now my wife is in the nursing facility getting the best of treatment. In many respects I feel lucky. So many people on here it sometimes seems are just left to it. It's such an awful disease, it's so sad that it takes everything from the sufferers and their families.. I've often thought that if it only affected my wife's memory I could cope. But sadly that's not the case. I'm rambling again, I'll finish now. Wishing you well, Al.
     
  19. Guzelle

    Guzelle Registered User

    Aug 27, 2016
    347
    Sheffield
    Thanks for responding. I do feel just left to it. He is calmer now but more confused. Getting up at 5 am thinking I am shouting him and saying it’ll be better when he’s home.

    We will go for our walk with the walking group this morning and then try the chemist again for his tablets and hope the mix up is sorted.
     
  20. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,917
    Suffolk
    Manoeuvre!
     

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