New to this. Help? Not sure what to do

Discussion in 'Welcome and how to use Dementia Talking Point' started by Dejaq, Oct 13, 2019.

  1. Dejaq

    Dejaq New member

    Oct 13, 2019
    3
    Hi. My dad having a bad heart for years, never very well, has bloated stomach that no one ever has found reason for and sore feet (lack of circulation), so generally never very comfortable, but ok. In July this year after being pin sharp mentally, he got forgetful and confused. After what was a panic attack and a&e trip which he said was a heart attack (wasn’t) I pushed for some mental checks and he was finally diagnosed after cat scan and assessment as moderate vascular dementia, it has been so rapid we are only just coming to grips with it. We were coping, he was just confused but compliant, my mum took control of his pills which he was forgetting to take and gives him chores to do, keeping him active and all was ok, never quite physically comfortable but same dad, just confused a lot.

    But few weeks ago he complained about his puffy stomach and indicated he felt he might have a bladder infection, so we took him to the doctors, where he told them he was fine, didn’t know why we had taken him? But we tested his pee anyway, all clear, but since then every morning he wakes at 6am, asking me to call the doctor I’m so ill....he seems fixated he has some form of infection and feel ill and goes all helpless. When I ask his symptoms it’s goes from chest pains, can’t breath (he is breathing ok), then his belly, uncomfortableness and feeling sick then he holds his head in foggy ness and then cries. I talk him down with calm words and and tell him we can’t cure his foggy head and getting up and dressed will make him feel better and it does (I am going back to doctors to check his pee again and belly just in case), but I think it’s just morning confusion and he knows he not right, but he is still lucid enough to know it and be upset by it and that the other symptoms are anxiety. my soothing words help, but 6am next morning we do it all again, and next day again and again each day.. taking longer and longer to get him up and out of bed, but once he is up he is generally ok. I don’t know how to break the cycle and worry taking him back to the doctor feeds his “I’m ill” need a doctor more. My mum thinks I’m too soft, pandering with him, she goes down the your fine, learn to live with it, get up and moving approach, but that has started to angers him, as he knows he is clearly not fine... but a doctor can’t help him either? Has anyone else had anything similar, found a way to deal with it. Sorry for the long post x
     
  2. Bay21

    Bay21 Registered User

    Jul 31, 2013
    17
    Hi Dejaq,

    Sorry to hear about your father's diagnosis and the problems you have had. My Dad has Alzheimer's and the behaviour is very similar. He went through a phase a few years ago (pre diagnosis but looking back I'm sure it was the start of things) where he would be at deaths door, unable to breath etc and would insist on ambulances being called to fast track him into hospital. Then all of a sudden it just stopped. He was officially diagnosed in December and since having a brief stay in hospital at the end of August, he has taken to staying in bed all day - reasons range from painful legs & elbows to not having any energy to get up. I will nag him constantly to get out of bed and when he does, he generally fine. I too am at loss of how to deal with it. Not much help or advice to offer but I am definitely in a similar boat to you.
     
  3. Dejaq

    Dejaq New member

    Oct 13, 2019
    3
    Thank you for your reply, really helps to know I’m not alone and that this might be normal ish. And hopefully a phase that might pass. Sorry to hear your troubles too, hopefully we both might get some advice here that might work. So appreciate it. My mum is afraid once he takes to his bed he won’t leave it and fears bladder control issues, which terrifies the both of us.... ....but he seems to rapidly be going from pretty mobile to frail... mum thinks tough, rather than sympathetic approach will prevent him giving up and giving into it, like he is putting it on (in fairness dad was a take to his bed with a cold person before, and my mum is a rock hard suck it up and get on with it person, so I can see her logic), I wonder if she is right, or it’s just anger and fear of the disease mum is reacting to, and dad needs a gentler hand as he must be so scared, he does seem to calm better with My approach, but am I enabling him into frail and bedbound? how we find the right approach to help him live with it....not easy xxxxxx
     
  4. Lawson58

    Lawson58 Registered User

    My husband has had numerous heart problems for about sixteen years and he was diagnosed with Alzheimer's over five years ago.

    He has complained of feeling bloated for the last couple of years and has had all sorts of tests, scans etc and absolutely nothing has shown up. He is quite convinced that he has some sort of cancer though GP has assured him that he is fine.

    However, he does have problems with his bowels and seems to go from constipation to diarrhea. He won't take any advice about about taking small doses of laxative to regulate this and I am sure he aggravates the situation by overdosing himself when he has constipation.

    Nor does he take much exercise so I think his bloating is solvable if he would take notice and help himself sensibly.

    I know bloating can be tied up with heart disease but I think that would have been picked up by someone by now if that was what the problem is with your dad.
     
  5. Ohso

    Ohso Registered User

    Jan 4, 2018
    165
    Obviously its complex and maybe needs more investigation but would it be worth trying a different tact till this happens

    My mum complains of headache, fogginess in her brain, currently has sore ankles and unable to walk. If she ever asks me whats wrong with her, she is sometimes lucid enough to know that nothing is how it used to be and cant make sense of anything. l never mention dementia l simply tell her she has a urine infection wjich accounts for her feeling so ill and that she has medicine for it so give her either antibiotics if true or regular paracetamol if she hasnt..having a specific 'diagnosis' seems to satisfy her and she accepts thst as a reason and just waits to 'get better in a few days' your dad may well not be fooled but worth a try
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,434
    East of England
    @Dejaq I am so sorry for the swift decline of your Dad and can understand your distress because my husband has had a swift decline into Alzheimer’s disease and needs support for most personal care, never goes out now and his safest place is his bed. I have tried the robust get on with it approach but that doesn’t work. I now give him easy to eat foods and he has an almost daily dose of orange flavoured Movicol prescribed by the doctor to give him a natural bowel movement because he had got constipated. Otherwise I give him clear instructions and encourage him to follow them like getting up and dressed with the necessary help, which he is not keen to do, eating which he also doesn’t want to do. The food and the Movicol are the only essential elements of his day, the rest I try to give him some control over what he does because it’s the only thing he has left. I always ask myself ‘what purpose does it serve?’ when I get frustrated at what he will and will not do and I get less stressed. In my experience he will change as time goes on, the only trouble is there is no set time scale. My husband too complains of muddled fuzzy feelings in his head which is why he likes to be in bed, he can put the two together. He does have wakeful periods in the evening when he will watch TV on and off sitting upright on the couch but he can come and go. It drives me mad but I cannot stop it. My priority is to try and keep him as contented as possible, don’t always succeed but I just keep bashing on. Your mother is trying to do what she thinks might work and the only way she can modify this is if she can see that it doesn’t. I know because I have been down that path. The dementias have a life of their own and for us to change that is almost impossible. All we can do is respond to the symptoms with as much guile and compassion as possible.
     
  7. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,176
    Nottinghamshire
    Welcome to DTP @Dejaq

    I hope you'll find help and support from the forum members. I certainly wouldn't have got to the end of my dad's dementia journey with my sanity intact if I hadn't had help from the people here who'd walked the road ahead of me.

    I found that what worked for @Ohso also worked for me - I used to give dad a paracetamol or an indigestion tablet and agree to call the doctor in an hour or so if he felt no better. It usually worked. Dad was the type to panic at the slightest little thing and would have been at the doc's for anything and everything (I'm the opposite).

    I think that by mid stages dad knew that something wasn't right but had no idea what the real problem was. He just needed reassuring. This phase passed as dad's dementia got worse and by then he thought he was perfectly healthy...which brought a different set of problems but was easier to deal with in some ways.
     
  8. TNJJ

    TNJJ Registered User

    May 7, 2019
    646
    Female
    cornwall
    Hi.Has he had blood tests?That maybe reveal more.That would also reveal the state of heart and kidneys.It would rule it all out.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    10,712
    Female
    South coast
    I think you are almost certainly right. My MIL with Vas dem used to do this too. She would phone me up telling me that she felt so ill and was in so much pain, but by the time I got there she had obviously forgotten phoning and had forgotten all her illness too! I like the idea of giving a couple of paracetamol and saying you will phone the doctor if it doesnt get better. You could also try passing off tic-tacs as tablets too.............
     
  10. Dejaq

    Dejaq New member

    Oct 13, 2019
    3
    Thank you all so much, can’t tell you how much help your answers give. I'm definitely going with the paracetamol placebos and try your advice tomorrow at 6am when I’m sure ’call the doctor’ will come again xxxx. I got him to the doctors today, they are arranging blood tests and another pee test. Got antibiotics just in case, but I got the impression she feels it might be the dementia or something more sinister, talked about cancer after she felt his stomach a bit and asked him to approve a “do not resuscitate“ order, which he did and she is arranging. so that’s one job I don’t need to figure out, he wanted one of those from the beginning. Bloods will tell more I guess, one step at a time, she talked to him that more investigations could be invasive and if it did find something, might not be helpful..... He was at his worst and very frail at the docs, and just wanted to die as quick as he can, so hard to hear, but she is probably right, I think I need to know for sure one way or another but if it was nasty we would not treat i think. Mum agrees, still here is hoping it’s just an infection.

    Weirdly one hour later he was fine, happy and quite mobile and we had a visit from a dementia charity to give us signposting and an ongoing contact for help, he was very perky with her...so odd to see in the space of 3hrs the difference. not going to be an easy journey this. Thank you all so much x
     

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