1. Welcome to Talking Point - an online community for everyone who is affected by dementia. Whether you have dementia or know someone who does, we will be there for you.

    Sign up to join the community, or Log in if you're already a member.

    If you need help using Talking Point, read our Help pages or contact us at talkingpoint@alzheimers.org.uk

  2. Hi everyone, Talking Point is back! We’ve updated the software in order to improve security, design, and the way the community works, and introduced some helpful features.

    Find out more

Two years to get this bad. What now?

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

  1. AL60

    AL60 Registered User

    Oct 14, 2016
    184
    Cheshire
    Hi. Just over two years ago I noticed subtle changes in my wife's behavior. Only little things, things you only notice if you've known someone a long time. Over the last two years the changes became less subtle and more and more obvious. Then came the first Dr's appointment, the first memory test and the first , "Don't worry, it's probably just stress and anxiety". Yet all the time I knew it was more than that. Then things got so bad for her she had to go off sick , long term. Then another Dr appointment, another memory test followed by a referral to a memory clinic. More tests, "We think it's extreme anxiety" I think at that stage I was the anxious one. As well as being off work she'd also given up driving. One more memory test, that was it. "We think now it may be a memory problem after all". Well, three scans later we now have the result. After all this time convinced it could only be dementia, my only thought was which one. Of course I never gave up hope it may be something that could be fixed, yesterday came the diagnosis. Vascular dementia? They can never be 100%. So,what now. It's strange , for a long time I've guessed the worst but now I know, it's still come as something of a shock to the system. At home nothing has changed, it's business as usual, although I have noticed a change in her behaviour once again, not for the better either. She doesn't seem that bothered, if anything she's relieved it's not alzheimers. My next task is to persuade her to accept the medication, don't worry, she's OK with it now. I've taken early retirement, technically it's my last day tomorrow although I've been off since July. So I've slowly been morphing into the role of carer, I must admit at times I've been finding the transition difficult. But between us and the rest of the family I'm sure we'll be OK. I also know that there will be assistance on offer now from the team at the clinic, so we're never truly on our own. And of course this forum, a great place to download when the road gets bumpy. I'll go now but I'll post again when I feel the need. Al.
     
  2. Beth56

    Beth56 Registered User

    Nov 14, 2016
    39
    I am so sorry, I am in the same boat, my oh has been having various problems for the last 3 years, today he has agreed to go and see his doctor, we have an appointment on the 12th of Dec. I have seen a deterioration , I think of it as downward steps. Months ago I felt at the end of my tether, and was ready to run away. I now make as much effort to just go with the flow. Hope you will now get some help


    Sent from my iPad using Talking Point
     
  3. Casbow

    Casbow Registered User

    Sep 3, 2013
    816
    Colchester
    I hope you all get the help that you need. Not just now but in the future. Everyone who is diagnosed with a form of dementia will have a different journey. None of us will know what the journey will be. My husband was diagnosed 9 and a half years ago. It has been years of different changes and different challenges. At the moment all is reasonably ok. So keep posting. There is always someone that can advise or help you.xxxx
     
  4. AL60

    AL60 Registered User

    Oct 14, 2016
    184
    Cheshire
    Hi again. Certainly wasn't intending to post again so soon. But as it's the wrong side of midnight and once again find sleep isn't coming easy tonight, this seemed a good idea. It's looking to me as though we really are all in this together. So many similarities everywhere on this site. It could be seen as depressing, or, it could be seen as a wealth of useful information. I have a question, and I know someone, somewhere out there will have a number of ideas and suggestions for me. Mealtimes are becoming a nightmare. Just lately the food smells funny, it's too hot ,it's not hot enough, is this the one we normally have, it just doesn't taste right, the plates, cups etc smell perfumed. To me it seems just an excuse not to eat. And believe me it's any excuse not to eat. But any amount of junk goes down a treat. I know the obvious answers, don't buy the crisps, chocolate, cake and biscuits. You try stopping her. It's like having a very grown up child. If food isn't hot enough, heat it, no, can't have that. If it's too hot , let it stand, good grief no, can't have it its too hot. You just can't reason with her. And that's only meal times. This isn't working, I'm even more awake now. The reason I'm concerned about her lack of normal appetite is over the last couple of years she's lost about forty lbs give or take. It's important too that she has a nutritional diet now more so than ever. But try telling her that. I know that there are lots of things I could try but one of the problems is that she doesn't like change. Just keeping to the tried and tested isn't working. If she had the choice she'd have beans on toast every meal. I've wondered if the dementia has altered her sense of taste. Anyway, best go now. Croissants for breakfast, can't go wrong there, can I? Al
     
  5. pamann

    pamann Registered User

    Oct 28, 2013
    2,639
    Kent
    Hello Al60 welcome to Talking Point, eating a normal diet is almost impossible with any type of Dementia, before my husband went into a CH, he would not eat any dinners, he had always eaten everything, he lost 3st in weight, now after 16months he has put on 5st, he eats everything that is given to him, l think the reason why is because, he always loved going out for meals, but when his eating habits got embarrassing l stopped taking him out, now he is eating with other people he thinks he is in a restaurant. Try not to worry too much they will only eat what they want to. Keep posting.
     
  6. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    4,395
    Yorkshire
    hi AL60
    I hope you did get some hours sleep last night

    from experiences with my dad, these things seemed to go in phases
    so I'd suggest you keep trying with 'proper' meals; don't make an issue of any complaints, either put the food to one side on the table and see if your wife gradually accepts it or remove it from the table and see if she gradually accepts it - if not just go with the flow and let her eat what she will accept
    I appreciate that in these enlightened days we all feel the need to have a balanced diet - and I certainly agree that it's important for YOU to eat well so that you keep healthy - for your wife, right now, it's more about making sure she keeps energy levels up so eating junk is better than not eating - definitely keep trying to slip in fruit and 'healthy' stuff, maybe add in some of the balanced drinks that are on the market, your wife might take to milkshakes made with these, or make your own with fruit, maybe smoothies
    dad loved trifles and jellies so I made those with massive amounts of fruit in, and he was happy with that - I cut up fruit so it was bite sized and he ate that more readily than just giving him and apple - at breakfast he had porridge with berries added and a banana
    he did move back to eating meals - and then I realised he was also unsure of exactly what to do with cutlery etc - so I ate with him and sat so he could watch what I did and copy (we always had meals at the table so the plate was on a solid surface) - and I sneakily cut up his food before I presented it to him (sometimes I also cut up mine as he was quick to spot differences!)
    I found too that dad was just not drinking, so I made sure we had a drink every 2 hours (roughly) so that I knew he had drunk enough during the day - I'm afraid I also 'nagged' him to drink, just gentle prompts eg this is lovely juice, have a few more slurps dad - and I always drank with him so he saw I was doing the same
    I did find that if I got tense, dad got tense - so I learned to keep a calm front up whatever was going on, and reassured him that he was doing well/right when he did eg this meal is going down well, dad, must make it again soon; that glass of juice disappeared quickly, dad, must buy some more - I know it may sound patronising but dad did seem to like being praised and included in choices (though I quickly stopped actually offering him choices as that just confused him and led to a refusal - so I handed him whatever as though he was, of course, going to accept it)
    sorry - didn't mean to go on
    best wishes to you both
     
  7. Alicenutter

    Alicenutter Registered User

    Aug 29, 2015
    556
    Massachusetts USA
    Could you use beans on toast, and anything else your wife appears to like, as a centrepiece for a healthier meal? Like hide vegetables under the beans, or crumble cheese on top? In itself, beans on toast isn't bad - wholegrain toast, the less sweet beans etc. It's protein and fibre, you just need to get some green stuff and fruit in there somewhere, and a bit of cheese or yogurt. Just an idea...
     
  8. canary

    canary Registered User

    Feb 25, 2014
    4,347
    South coast
    I used to put a bowl of "grazing food" next to mum - things like cubes of cheese, cherry tomatoes, grapes or other fruit cut into cubes, mini pork pies cut into quarters - so that she could just dip in. She always said "oh that is too much, I could never eat all that" and I would just say casually "well, just eat what you want". An hour later it was always gone. I think she found formal meals too stressful.
     
  9. Del24

    Del24 Registered User

    Aug 17, 2014
    67
    Hertfordshire
    My wife doesn't eat the things she used to like anymore so I cook the meal and then if she doesn't eat it I take my meal into another room and 9 times out of 10 she eats it so we both have our meal without any arguments.
    Have you tried serving the meal on a red plate and a smaller portion a red plate has helped us.
     
  10. AL60

    AL60 Registered User

    Oct 14, 2016
    184
    Cheshire
    Hi. Thank you all for your replies. Judging by them I think I'll carry on but not get too stressed. So tonight it was pizza and oven chips again. Thats her food of choice at the moment. I asked her if she would like some ice cream for afters, sprinkled some chocolate flakes on too. Couldn't fail. It was far too cold and insisted I put it in the microwave for 30 seconds defrost. Honestly, although it can be frustrating, sometimes you can't help but smile.
    I don't know if it's worrying about her diagnosis that's playing on her mind but she certainly seems to have deteriorated this last few days. I suspect not as she did seem quite pleased when we were told that it wasn't alzheimers. I'm certainly not going to tell her that vascular dementia is just as bad. No, I'll just carry on, as best as I can, putting up with her increasingly odd ways. Last weekend while in the local supermarket I managed to lose her, no, not on purpose, one minute next to me, then, just vanished., we would normally have a phone each, just in case. Not this time. Luckily some friends of ours found her outside looking for the car. They took her to the service desk where they put out an announcement. Needless to say, when she found me it was my fault for wandering off. All well this time but it brought home to me this isn't going to get any easier. We're going to the Manchester Christmas market on Friday. I'll be making sure both phones are charged and watch her like a hawk.it's all quiet now, she tends to go to bed early so I get some wind down time. I don't know how I'd manage without it. It's surprising how tiring it can be. Her mood and behaviour can be so childlike at times, but children get better as they get older..... many might disagree with that but our four girls are great. Thats it for now Al
     
  11. dasntn

    dasntn Registered User

    May 21, 2014
    10
    North Devon
    Hi,
    Regarding keeping track of my wife, I bought something called a Trackr via the Internet. Small thing, about the size of a 2p and I put it in her handbag. It Bluetooth connects to my phone, and you can set alarms so that if you get separated by more than the Bluetooth range, around 3 metres, it sounds a warning on the phone. I mainly use it to track my wife's handbag, which she gets very agitated about losing, but means I also track where she is.

    As to eating, it is sad to see what was once favourite food (ham, egg and chips in my wife's case) no longer liked, apart from the chips! Luckily we have four or five meals she will eat. I think you have come to the right conclusion, not stressing too much on the health aspects, just making sure that she does eat something.
    Best wishes to you.


    Sent from my iPad using Talking Point
     
  12. AL60

    AL60 Registered User

    Oct 14, 2016
    184
    Cheshire
    Hi again. Not for the first time I find myself staring at a blank tablet screen, wondering where to start. It really has been one of those days today. It started with a visit from a carers assessor . As soon as he arrived the poor guy got it in the neck, welcome to my world thought I. I don't need a carer, I don't have alzheimers, I only have vascular dementia, I can do everything just the same as before. As for the admiral nurses, forget it, we don't need those interfering either. My memory is fine too, look, I've got these memory loss clocks in three rooms now, how can I forget what day it is! Then all this afternoon it continued, along with a fair splash of nastiness thrown in for good measure. I know it's the dementia not the person, but it doesn't help. I would be lying if I said things were fine and we were managing, yet that's how she comes across with people. Yet I know different. Earlier this evening she was making plans to go to a Christmas fayre next Saturday, November 29, we went already. then she noted that it was a close friends granddaughters birthday last Saturday, she was convinced she'd missed it. We went with presents last Saturday. In most ways I can cope with her memory and confusion. But I am finding it increasingly tough being the target of these verbal tirades. I don't think they're a new thing, but they are increasing in frequency and intensity. She hasn't started on any medication yet although she has been offered donezipril. The sooner we get the prescription the better. I'm not expecting miracles, I'm a realist. Twenty minutes ago I didn't know how to start, now I don't know how to finish. But I will. But before I do I'd just like to say thanks for previous replies, all advice greatfully received. But as soon as you think you have something sussed, along comes something else.
    Will post again Al.
     
  13. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    In some ways I think life gets easier later on. I suppose earlier expectations of "how things will be" get dumped and one gets more used to adapting to unwelcome changes.
     
  14. technotronic

    technotronic Registered User

    Jun 14, 2014
    201
    I agree n sympathise with what you're going through AL 60 & everyone else as have been through a lot of that myself over last few years, latest things I have are the not eating food when it's cooked n ready even though she's said yes to having it for tea when asked n shown it, we tend to eat as n when n not fixed meal times like we used to.
    Other thing is constant talking n questions all the time, and also trying to watch a tv programme in peace n always through, as wife will tend to wander about the house moving n changing things n also hiding things !
    I recently bought a brand new vacuum recent for its power head to help clean carpets as old vacuums power head no parts are available in UK for anymore, I can't use the new power head on new vacuum as my wife has hidden it somewhere in the house!
    My wife at one time would chuck stuff on lit gas fire which I tried to stop her doing much as I could, it eventually mucked up the gas fire n had to have engineer out this year to fit a new part!
    Have also learnt not to show any anger or annoyance at things that frustrate me as can make her get upset n frightened easily.
    We are all on the same road with looking after our suffering loved ones but each journey may different though similar in some aspects.
    All we can do is adapt n adjust to the different situations as they occur, easiest way I've found


    Sent from my iPhone using Talking Point
     
  15. technotronic

    technotronic Registered User

    Jun 14, 2014
    201
    My wife went on medication prescribed for a while but when they ran out we didn't renew n she's been much better without taking anything, I prefer her to be more herself without them as tablets can help but also change her for the worst!


    Sent from my iPhone using Talking Point
     
  16. AL60

    AL60 Registered User

    Oct 14, 2016
    184
    Cheshire
    Hi again. Thanks for those last two replies. So many similarities, in your post I thought it was one of mine, copied. Definitely been another one of those days. It doesn't take much to set things off. I'm still waiting for her to start medication, she saw her dr at the clinic a week last Monday, initially there was resistance to taking anything, but as per the very next day she'd decided she needed to try something at least. So nine days later we're still waiting for the prescription. I rang the clinic this morning to find out where they're up to , six hours later I received a reply to ask me what I wanted, I told them again, and am still waiting for a reply. No rush then. Don't you just hate these dark winter days. I keep telling myself, come the spring things will seem better. I certainly hope so. It's nearly time to prepare the next meal. More stress. Keep it simple, I found that works best. Yes, it can be frustrating, spending time and effort in preparation, only to see it left on the plate. Egg and chips, can't go wrong, or can It? Al.
     
  17. Antiquenotold

    Antiquenotold Registered User

    Dec 1, 2016
    11
    I do so sympathise over the problems with food. Mum has now got so that it will take her a couple of hours to eat a slice of egg custard or something like that. She says she's enjoying it and then just sits and looks at it rather than actually eating. She has all sorts of other physical problems so is very immobile and doesn't need many calories but it is still a worry. I guess all we can do is try not to stress about it too much and try to avoid passing our tension over food and drink on.
     
  18. AL60

    AL60 Registered User

    Oct 14, 2016
    184
    Cheshire
    Hi again. It's not all bad on the food front. A couple of days ago I prepared a snack lunch for us both, in the time it took to boil a kettle she managed to eat hers and mine too. I think the secret with most things is not to get stressed. Easier said than done, I know, and it's not often I manage to stop myself, but three deep breaths and counting to ten does help a little, I like to think I'm getting better at it every day. That said , I might think I'm getting better, but the reality is im finding things get harder day by day. At the same time I'm trying to get used to being a carer, I'm also trying to get used to not being at work. At least I have time to post here. My wife has now started on her course of donezipril, I don't know what to expect from it, but we'll just try it and see. Once again it's time to prepare tonight's meal, whatever happens there won't be much wasted, I skipped lunch today so I've room for any leftovers, wrong I know, but hey, what the heck. Al.
     
  19. AL60

    AL60 Registered User

    Oct 14, 2016
    184
    Cheshire
    Hi. Once again. This posting is becoming something of a habit. A good one though. A trouble shared and all that. All the words I mean to write are there but I'm struggling to get them down in the right order. The bottom line is, it's early days and I'm finding it hard to cope. I know that help is available but my oh is in such denial that she has managed to decline all offers, even those offered to me. It's a waste of time trying to reason, and arguing about it is out of the question, so the only option at this stage seems to be to suffer in silence. Of course this helps all kinds of negative emotions to bubble up from under the surface. Anger is probably the hardest one to suppress, anger at what appears to be total selfishness on her part. Yet I know that it is not her. Resentment because of the things I have had to give up. Disappointment at what will now never be. Then perhaps the worst one of all, guilt. Because of these feelings I then feel like I'm being the selfish one, after all my wife is the one whose really suffering, I'm the one who's fit and well, then why do 'I' feel so cheated. I suppose all this is perfectly normal under these trying circumstances. And knowing that this is a normal reaction means I'll go through them again tomorrow and the days after. It appears to be a cycle I can't seem to break. I told you at the beginning all the words were there. Earlier on today it actually crossed my mind to just walk way. I never could, but the very fact I could think of such a thing , then more guilt. Where does it end. I'm quite sure we'll be OK. The very act of putting my thoughts into print on tp I find is a great therapy, and I always feel better after posting . Also as I said at the start, a trouble shared, it works for me. Al.
     
  20. canary

    canary Registered User

    Feb 25, 2014
    4,347
    South coast
    I do feel for you al - all the things that you describe are par for the course :(

    No, you cant reason with her, logic has gone, she will probably never understand that there is something wrong with her (its called anosognosia) and trying to persuade her will just be frustrating for both of you. Someone said to me - it is often easier to just do it and ask for forgiveness afterwards, than it is to persuade them in the first place.

    I never did manage to get mum to accept any help, but after that I decided to start things early with my OH. I have been amazed at the things that I have been able to do. I have got rid of a load of things that he insisted that we keep. I didnt tell him - just did it when he wasnt around. I thought he would definitely notice and would be cross, but he hasnt said a thing. Ive also hired a cleaner and just mentioned the day before that I had got someone coming to give me a hand. He said nothing and now just accepts her. I can hardly believe it.

    Be gentle with yourself at the moment. It can be overwhelming at the start. It is normal to grieve the loss of your dreams and the gradual loss of the person your loved one once was. Ive thought about just walking away (and even ending it all) too, but Im still there
     

Share This Page