New here: finding it hard to cope, thoughts appreciated

Discussion in 'Welcome and how to use Talking Point' started by Pensive, Jul 4, 2018.

  1. Pensive

    Pensive New member

    Feb 11, 2018
    3
    Hello I am new to the Forum, but sadly not new to Dementia. I am 72 now and have been a carer for over 20 years, first, for my dad who contracted Lewy Body, which turned a really gentle dad into someone who became dangerously aggressive. Next, (a few years later) my Maiden Aunt, who helped me with my dad, was eventually diagnosed with Alzheimer's. I was living in Scotland at the time so had to do a lot of travelling down to northern England meeting up with doctor's,social workers, taking her for hospital appointment etc, and had to deal with everything through The Court of Protection (quite an onerous task). Both had ignominious hospital deaths which I have never really recovered from.

    A few years later my only child, a daughter, who is single, was eventually diagnosed with Chronic Fatigue Syndrome (a retired GP friend informed me that it is a name for a condition they have no idea what it is) and has been virtually bed bound for 7 years. I travel to her home (60 mile round trip) at least three times a week to do her housework change her bed, do cooking and bring away her washing. My husband and I have to pay almost all of her day to day living expenses. Finally, about four weeks ago after 12 years of badgering our GPs my husband was sent to the local Memory Clinic and after a battery of test was given a diagnosis of Mild Cognitive Impairment. The Clinic had been informed that my husband is from a family of 4 boys and 4 girls. One girl died of Cancer in her 50s, two died from Alzheimer's related problems, and the other has been in a home for years, again with Alzheimer's. The eldest brother has had Alzheimers for a few years now, and after a stroke has been in a home for two years. Last year another brother was diagnosed with Early Onset Alzheimer's, and now my husband has a diagnosis of MCI that "may or may not become some form of Dementia" which leaves only the youngest in the family (who we have no contact with) who may or may not be OK.

    I felt completely excluded in the dealings with the Memory Clinic, being only allowed in the initial interview which was not the place to sit in front of my husband and tell them "how life with him really is" without causing him great stress and big problems for me, as his aggression can be quite frightening.

    The diagnosis was a swift affair, he was told he didn't have Dementia, and could continue diving, the scan showed some damage to the blood vessels in his brain and that was it, my husband was given a photocopy leaflet prepared by Alzheimer's UK explaining what Mild Cognitive Impairment was.

    I am really not happy with this diagnosis as I don't think he should be driving, he has had a couple of accidents where he eventually admitted he didn't see the cars, and in any case the accidents were all my fault (even though I was at home at the time!) I won't let him drive when undertaking longer car journeys. I rang the memory clinic and told them about a recent incident when he had drunk a lot of wine for lunch and went out and moved the car when we were at my daughters, but none of this seems to bother them. My husband and I never drink and drive, he had just completely forgotten.

    I am angry, distressed and I suppose really feeling sorry for myself, and I am not coping very well with it all, I find myself weeping a lot of the time. My blood pressure is dangerously high it was 234 at one stage and they can't find a drug that doesn't cause me terrible side effects.

    Last week my husband has had his exit interview from the Memory Clinic and that is it. We then went to the GP to ask if husband could try one of the drugs that may stave off the symptoms getting worse for a while and he was told because it was MCI he would not be prescribed them.
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    2,030
    N Ireland
    Hello @Pensive, you are welcome here and I hope you find the forum to be a supportive place.

    You have so much on your plate that I’m not surprised you are stressed.

    With regard to medication for your husband, it’s true that medication is not given for MCI as this was the position for my wife too. However, my wife was kept under review when she got that diagnosis and within a year she was diagnosed with Alzheimer’s and given medication. I would try to keep some pressure on the GP for a further review/tests in case a dementia develops.

    Just as important is yourself. Maybe it would be a good idea to talk to the GP about your own state of wellbeing as there may be help available to you.

    On the driving issue I know that some members report their loved ones to the DVLA as I understand that they will respect privacy in the matter.

    Overall, I feel you would benefit from talking to the experts on the help line and the details are
    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm

    You may get more replies if you make a post on the open forum about these issues.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    6,248
    Female
    South coast
    Quite often with early Onset Alzheimers the memory is less affected in the early stages so that they pass the Mini Mental State Examination with flying colours and the extent of the problem is underestimated. Having said that, though, if his MRI is clear they wont diagnose dementia at that stage. He has a diagnosis of MCI, so they are not saying that there is nothing wrong.

    Many people with an initial diagnosis of MCI will go on to develop dementia, so if things get worse please go back to your GP and ask for re-referral. In the meantime, keep a journal of all the odd things that he does and your concerns, so that you can refer back to them in the future. It is bad that the memory clinic did not allow you to give your side of the story in private - the account of someone who them well is an important part of a diagnosis of dementia. In future your best bet will be to write a letter outlining things that you are seeing and your concerns and either give it to the receptionist when you book in for the appointment or find a nurse and give it them, asking that it is attached to your husbands notes so that the doctor can see it before the appointment. Another thing you can do is sit behind your husband so that he cannot see you and when the doctor asks him questions you can nod or shake your head to indicate if his answers are correct without your husband knowing. Make sure the doctor is aware of the family history.
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    6,203
    Yorkshire
    hello @Pensive
    a warm welcome to posting on TP
    with all that you describe, I am not surprised that you are felling as you do, you have every right
    @canary has said a lot of what I was going to
    I'd also say, though, that one way to make the situation clear to your GP (I am assuming you and your husband have the same GP, which may not be the case) is for you to discuss how all this is affecting you, and keep doing that so there is an ongoing record alongside of keeping the GP informed in writing about any changes in your husband's presentation (they may not be able to discuss his health with you, but have to note any info you provide for them)
    I am worried that you say
    - please be sure to keep yourself safe and make sure his GP knows about this for your husband's sake as well as yours
    sorry not to be much help but hope it does help to post here and get things off your chest
     
  5. Pensive

    Pensive New member

    Feb 11, 2018
    3
    Thank you for your reply, it is lovely to read such kindness and help from you all. In the end I did get to see the nurse who attended the Exit Interview on my own at the Memory Clinic . When she rang to make the Exit Interview appointment at our home I asked if I could make an appointment to see her on my own, trying to make her understand why it was difficult to do this straight after the Exit Interview was really difficult. She suggested we go to a local cafe, to which I said no, as to was too public, and how would I explain to my husband where we were going and it why, I became tearful and said you just don't understand.. On the day of the Interview, when my husband left the room, I was quietly given an appointment to see her at the Memory Clinic.

    It was a a big mistake, no notes were taken (stupidly I did not type everything out as as been kindly suggested by Canary). I felt her demeanor towards me was cold and negative, but I did manage to say that perhaps when someone is with their husband/partner and tells the Psychologist that their husband/partner is aggressive could be shorthand (in my case) for underlying problems and perhaps should be investigated privately with them. I felt so uncomfortable after laying myself bare to her,.and especially when I was told I could leave him if I didn't want to look after him, I replied that I couldn't be so cruel. Shocked I knew then It was time to go.

    Very recently I have been contacted by a Charity (perhaps through the Memory Clinic) that cares for Carers and they have supplied me with a carers card and a lot of helpful literature not only for myself but also for my daughter.

    I contacted the local Alzheimers Society a couple of weeks ago and relayed my sorry tale and they are coming out to see us next week, so I no longer feel so isolated. I am sure like many people on Talking Point I have had to stop myself from feeling that I am somehow betraying my husband and have kept it all bottled inside, feeling I can't tell anyone.
     
  6. marionq

    marionq Registered User

    Apr 24, 2013
    4,547
    Female
    Scotland
    Betrayal! You are heroic. You are and have been coping with so much. Insist on help both with your daughter and your situation with your husband. Many of us know that help us out there but we need to find out how to access it and sometimes that means we have to push a bit - politely of course. Let us know how things go.
     
  7. Grey1

    Grey1 Registered User

    Jun 30, 2018
    41
    My OH has an annual appointment with a consultant in the new year. I’m keeping a note of things that happen and the dates in the note section on my mobile. I don’t want to say too much in front of him, he can’t remember incidents and would be upset if he heard about them, I think. I looked up MCI after reading your post. It could well be his problem. If I feel I can’t say things at the next appointment, I intend to write to the consultant, with the diary. Or I may take a sheet with it in my bag, and give it to him, if there’s an opportunity. Sometimes it’s easier to do things in writing, people can think one is being over emotional, when actually, all one is doing is reacting to a difficult situation.
    My heart goes out to you. Having been a Carer so many times, and now this.....
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    66,160
    Kent
    Hello @Pensive . I hope the forum helps you feel less isolated and alone.

    I used to write to my husband`s consultant a week or so before an appointment, with updates on behaviour and other symptoms .

    The consultant appreciated it and acted accordingly. He would ask my husband questions relating to my letter and my husband reassured the consultant everything was absolutely fine. Because of my letters the consultant knew it was not.

    Sadly there was little which could be done to make life easier but at least I was listened to and it was recognised that my husband was a very long way from being fine.
     
  9. Grey1

    Grey1 Registered User

    Jun 30, 2018
    41
    That’s a really good way of approaching an appointment.
     
  10. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    56,296
    Female
    Dundee
    That's exactly the approach I took with my husband's appointments. It meant I could sit and think through what I wanted to say rather than be reactive. I was also happy not to talk about my husband in front of him. Keeping a diary of our observations/concerns over a few weeks can be helpful when you come to write the letter. It might even be useful to use this thread to keep your notes rather than writing things down twice.
     
  11. Grey1

    Grey1 Registered User

    Jun 30, 2018
    41
    Well, ow I ‘m going to sound really thick. How do you save a thread?
     
  12. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    56,296
    Female
    Dundee
    You don't need to save a thread Grey. It will remain on the forum and be updated every time someone posts on it. You can choose to 'watch' a thread though. This means that when someone posts on it you will be updated and it will be in your list of watched posts. If you go to the top of the thread you will see the words 'watch thread'. Click on this and that's it done. It looks like this -

    Screen Shot 2018-07-06 at 16.31.11.png
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    66,160
    Kent
    You are not thick at all. This site is difficult at first and as you get used to it you wonder what you found difficult in the first place.

    To save a Thread , scroll to the top of the page where you will see `Watch Thread` in blue. Click on that and you will get an alert when anyone posts on the flag at the top of the page.

    I hope this helps.

    Thanks Izzy. You showed a better explanation than mine.
     
  14. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    56,296
    Female
    Dundee
    Cross posted Sylvia!

    I also just realised that you can bookmark something - click on the word Bookmark at the bottom of the post. I'm about to try it!
     
  15. Grey1

    Grey1 Registered User

    Jun 30, 2018
    41
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    56,296
    Female
    Dundee
    #16 Izzy, Jul 6, 2018
    Last edited: Jul 6, 2018
    Yes - I clicked on 'Bookmark' and then went to my account by clicking on my profile avatar. Lo and behold there was the option to look at my bookmarks. When I did this thread was there and the post I had bookmarked. You learn something every day!
     
  17. Grey1

    Grey1 Registered User

    Jun 30, 2018
    41
    Well, I haven’t found bookmark!
     
  18. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    56,296
    Female
    Dundee
    Here it is!

    Screen Shot 2018-07-06 at 17.38.47.png
     
  19. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    56,296
    Female
    Dundee
    Here is where I see the Bookmark option for checking my bookmarked posts -

    Screen Shot 2018-07-06 at 17.40.08.png
     
  20. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    56,296
    Female
    Dundee
    @Pensive - I hope we've not taken your thread off course too much!
     

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