1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    47
    I want to share my feelings with you, but my husband is not diagnosed yet. He has symptoms of possible Parkinsons, or some other neurological impairment and he's going for tests after the holidays. For some time I have experienced him as moody and isolated and - to be honest - I would welcome knowing there was something wrong, other than us just growing apart and him being impatient with me. How do you know whether it is a form of dementia or just grumpy old man? (Both sound pretty awful, actually). Very occasionally he bursts out with rage - always against me - and occasionally he is very warm and loving. I think our marriage has been deteriorating because of his coldness and withdrawal for about five years, but I have thought he was unusually forgetful of anything I say, and unusually withdrawn for the past three. His clerical assistant thinks he has deteriorated in his thinking and work. I don't know what to think - both options are depressing, and of course one is very serious indeed. I wondered if anyone had been in my position or understands these feelings?
     
  2. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,233
    Welcome to TP. Some of what you mention - the withdrawing, being moody and isolated, angry outbursts - could be due to depression. It's a worrying time for you but hopefully the tests that are going to be carried out soon will help to put your mind at rest and identify if there are any specific health issues. It may be helpful to record what has been happening, and if anything specific has triggered the behaviour, to give to the consultant/doctor when you attend the testing.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    I think a lot of us have been in your shoes @SaraKate
    My OH was doing exactly the same as your husband 7 years ago, but my concerns were dismissed as him being depressed, or marital problems. Now there is no doubt that his problems are neurological.
    You mention that your OH is having problems at work, so I thought I would mention that in early onset dementia the main problem is not usually memory and they can often easily pass the simple test (known as a Mini Mental State Examination). My OH can still pass this, even though his cognition (thinking) is profoundly affected.

    Your husband, could, of course just be depressed, or have an underactive thyroid or a vitamin deficiency, so it is best to see the GP to rule these things out. Im adding a link that you might find interesting. https://www.theaftd.org/what-is-ftd/ftd-disorders/behavioral-variant-ftd-bvftd/

    The only way to truly know the difference between something like depression and dementia is to have an MRI scan (though it doesnt always show any changes in the initial stages) or to have neuropsychology tests which are pen/paper and some verbal tests a bit like the MMSE, but in much more depth, and will pick out if there are areas of the brain which are not functioning correctly.

    Do remember, of course, that dementia will eventually become obvious to everyone.
     
  4. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,932
    N Ireland
    Hello @SaraKate, you are welcome here and I hope you find the forum to be a friendly and supportive place.

    I understand perfectly how you describe your current situation. Prior to my wife's diagnosis I had actually started to look for apartments so that I could move out as I was so fed up with her behaviour. To the extent that the diagnosis explained a lot it was welcome, however, it did, of course, present new challenges.

    Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area, should the dementia diagnosis come. If you are interested in these, clicking the following links will take you there

    https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

    https://www.alzheimers.org.uk/find-support-near-you

    You will see that there are Factsheets that will help with things like sorting out Wills, Power of Attorney etc.

    Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
     
  5. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    47
    Hello again, while we were on our ski-ing holiday he had two or three strange little episodes. In one he had a pain in his chest and was clear it was not a heart attack but wanted to sit down and be still. Then he seemed to be OK. On one occasion he lost the word 'rare' when talking about steak and then the word 'course' when talking about an education course. He had a sort of waking dream that he saw his father, and he had described his feet 'falling asleep' and when I asked him what he meant he said 'my feet are asleep'. He got anxious about paying for drinks on the plane with his card, because he thought it was in the wrong currency and did not understand that it did not matter. Got up to get money from his coat. Sat down to ask me for sterling. Finally paid on the card and got something to eat. He had thought there was nothing to eat. He has finally agreed to see the neurologist and was thinking about what he might say and he asked me do I think there is anything wrong? I said yes, and reminded him of these incidents. He says that he has googled a mini stroke and thinks it was that. I am glad we are going to the neurologist next month, and very glad that we are talking about this openly. He has a very painful shoulder possibly bursitis possibly 'frozen shoulder' and so in pain and sleepless. Is there any connection between any of these and alzheimers?
     
  6. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    I dont know of any connection between a painful shoulder and dementia, but Im glad you are going to see a neurologist soon - he/she is the best person to ask about this.
     
  7. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    47
    Canary - you're so well informed. Is there a connection between ministroke and Alzheimers?
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    Ministrokes (TIAs) are more usually associated with vascular dementia, but at the moment it is all just speculation. The neurologist will probably want to send him for a scan which will be able to tell what is going on.

    Hang on in there a bit longer
    xx
     
  9. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    47
    So ...... we had a few honest conversations and I showed him the journal I have been keeping of the many many episodes of forgetting things, especially times of trains, diary dates, asking again, forgetting again, and my husband acknowledged the truth of it - which I did not expect. We saw the neurologist who ruled out Parknsons at once, and sent him for a scan which is today. I find I am very stressed by all this, so much so that it is hard for me to maintain my very busy life, certainly not to take pleasure in it. It sounds stupid but I really hope for a conclusion that something is wrong because if it is we can put support in place, and tell our 6 children and let them support their Dad. I would feel OK about telling my colleagues that I cannot do extra work that I usually do.At the moment it's a secret and it all falls to me, to do all the admin, and keep calm and optimistic, and not say the wrong thing. Also we're rather clinging together in this situation which is so much better as a couple than when he was so irritable and angry with me. I feel I cant cope, but there is no escape anyway. And I do know that this is trivial compared with what so many of you are facing, so I am sorry to sound like a snowflake.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    Good luck with the scan.
    I hope you get some answers. This pre-diagnosis stage is very unsettling as you know there is a problem, but dont yet have validation.
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,595
    Kent
    However distressing a diagnosis may be @SaraKate there can sometimes be an element of relief if the condition is given a label. It gives you something to work with. You know it`s not in your imagination and as you say, you are justified in refusing additional responsibilities.

    Nothing is trivial with this illness. Everyone will have their own ways of coping or trying to cope.

    I hope today will not prove too traumatic for you and your husband.
     
  12. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    47
    Thank you all for reading and replying to this. The scan showed mild chronic small vessel ischaemia, we're seeing the neurologist for him to fully explain next week. But looking it up, it doesnt look good, and is consistent with what I had been observing: tremor, memory loss, mood swings, and loss of words. Now that my husband sees this in writing from a scan he has completely turned around and is very positive about the life that we have and how we might live in future, aware that an illness is on the way - but hoping its not too serious or quick. We're immediately much closer and after the first talk - when he said that he was leaving me, so that I should not care for him (because he's that sort of decisive and quick person) - we have agreed that we can live together and look to the future with some planning and courage. I admire him immensely, I knew he was brave but this is impressive.
    I feel deeply hugely shocked and very very tired. This feels a bit contrary but I suppose that though I had made the original observations, argued them through with him, spoke of them to the neurologist and really persuaded him to see the neurologist at all - I thought they would find nothing and I would be left with a disproved conviction to live with. Now, the first blow has fallen and there is very little pleasure in being right, I am surprised at how shocked I am to find what I had predicted.
    So I am just letting myself be shocked and trying to keep it to myself. I am being optimistic with him about how little the damage and how well he may be for years to come, and I genuinely feel that - at the same time as really wanting to crawl into bed and pull the covers over my head and wake up and it be all different. Im smiling at myself for being so hot-shot accurate about identifying his denial, and now finding myself completely in denial too. But anyway - we are in a new place with new knowledge, and more to come. And I will get my head around it.
     
  13. Lawson58

    Lawson58 Registered User

    I think you are very courageous and compassionate and I think that considering your recent experiences I think you are coping so well.

    Mostly it seems that it takes ages to get a diagnosis and then sometimes it relies on more a process of eliminating various conditions to arrive at that point. This might sound a little strange but I think you are fortunate that you two have managed to cobble your relationship together in spite of the struggles you have had.

    There are many of us on Talking Point who suffered the loss of that relationship during the pre diagnosis battles and though still together, nothing will ever be quite the same again.

    I would also like to encourage you to hold on to hope for as long as you can. Things are very different for each person with some form of dementia. My husband was diagnosed with Alzheimer's almost five years ago and he still plays bridge. He was Individual club champion last year and still plays 4-5 times a week. His physical health is slipping and in the last few months his short term memory is showing signs of confusion. He still goes for a short walk each day but I know he is losing his physical strength.

    Nothing happens too quickly when it comes to dementia as most of the dementias tend to progress fairly slowly so you may need to be patient and just as you think you have something sorted, something will come along to upset the apple cart.

    I wish you well in what lies ahead of you. Please let us know how everything is going for you.
     
  14. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,932
    N Ireland
    I think you are right to stay positive.

    My wife is now 2-3 years post diagnosis and I still stay positive and ensure we live much as we did before. I will continue to think and act like that for as long as possible.

    At times it gets tough from both an emotional and physical point of view but there is always advice and support here.

    Good luck to both of you, and the wider family.
     
  15. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    47
    Its very encouraging to hear from others who have been in my place, and especially to hear that the disease progresses at different speeds with different people. We're waiting to see the neurologist with the scan data to get his opinion. In the meantime my husband is insistent that this remains private, between the two of us. I can't manage that. Firstly, I'm very close to my two children (who are his step children) and I need their love and support for everything that I do (as mine is there for everything that they do) I can't suddenly keep a secret from them when it will make so much difference in how often I can visit them etc. Secondly, two of his children (my stepchildren) have already asked me if their Dad is OK - and one of them specifically said was it something like Alzheimers. I told them both that we would find out, that we don't know yet, that I would ask their Dad to tell them if we have any information so it's not a secret between them and me. I feel very strongly that the children especially have a right to know so that if they want to be attentive and helpful they can, and so that they're not neglectful by accident. One step-child is in the US and I think must be told as soon as we know anything more concrete, so that he can come home on a visit or not - knowing this information.
    But I know my husband will want no-one to know, he'd hate the pity, and he'd hate the observation. What has anyone else done? How did it work out? And would you do the same again?
     
  16. Lawson58

    Lawson58 Registered User

    My husband was and still is in complete denial about his Alzheimer's, partly because he can still function fairly well. He is going to be 80 this year so he puts everything down to old age. I think there is a difference in just blithely announcing the diagnosis to anybody and everybody and telling people who need to know. Because my husband had a cardiac arrest only a few months before his AD diagnosis, I thought that his siblings who live in UK should be aware of his health problems and let them know. He eventually told his sons but they live half a world away and have no concept of what the word Alzheimer's means and don't care anyway.

    I told my husband that I was going to tell my children because we had to complete Powers of Attorney and he could hardly refuse to agree to that. He is also very fond of my children and understands that if I become ill or have an accident that he will need to trust them and rely on them for help. He appreciates that they are reliable and caring people so he was OK about it all.

    I can understand why your husband feels as he does. It must be awfully scary to be told that you have something like AD and then there is the fear of what is going to happen to him in the future. We have all been told horror stories about dementia.

    I think that there are important times when you need to tell the person that you are going to do something, rather than asking. The default position of many PWD is to say No if given a choice so if you can find a way of dealing with it tactfully, then I would go that way.

    Unfortunately, this disease is never just about the sufferer. It has a huge impact on a caring family so my view is that they need to know too. Without their informed support, you are going to find it harder than it needs to be.
     
  17. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    47
    I wrote a long post and then realised what is hurting me. He just guilted me out at making a life for myself as well as my marriage with him, and threatened (very subtly) to end our marriage if it is not focussed on him. Im not going to be bullied into cutting down my friends and outside interests because I know that he likes his external life and interests, and when home he likes his space - every evening he spends alone. So I have been lonely in the past and if I were to do as he wants, I would be very lonely in the future - even if there is no deterioration.
    It helps so much to have someone to tell.
    I dont want to put this on to my children and he is insistent that I dont speak of it to my friends. He has taken the diagnosis of slight damage to be a licence to take up all sorts of beneficial hobbies, so he is whizzing around meeting people and doing things but he likes to come home to me. He hates his routine being interrupted by my travelling or visiting. I just had such a rush of guilt and sorrow! But I am sure that I have to maintain a lively and warm emotional life for myself.
    Just writing this makes it clear to me - thank you for reading.
     
  18. Intelnublett

    Intelnublett New member

    Jun 7, 2019
    6
    I have been reading through this post and I can tell you from the standpoint of the patient that it can be scary for us when we realize what is happening and what is coming! I was diagnosed with Frontotemporal Dementia (FTD) a few years ago and there are times like now that I realize what is going on but that is mixed with other times when I have been in complete denial and will argue the symptoms with my wife. I almost wish that I would be in denial more as I don't like what is happening and what is comming my way! The relationship with my wife has been strained, almost to the point of breaking many times but we somehow get through it. I am only 47 and still have a 16 year old at home and this really takes a toll on all of us. The best thing I can suggest would be to keep your husband as active as possible, both mentally and physically, and be as patient as possible. I also try to write my experiences down as much as possible which also seems to help. I wish all of you the best!!!
     
  19. SaraKate

    SaraKate Registered User

    Dec 29, 2018
    47
    I am so very sorry that you are so young and facing this disease. The two of us are mid-60s - but of course you never feel 'mid 60s'!You remind me to keep my focus on my husband who is facing this fear (or denying it). Trouble for me, is that he's doing such a good job of denying it that any little thing - the missing dog's lead, the lost keys, the not knowing what time we are going somewhere - is always quickly blamed on me.I have held to my plan to be away from home for some time every week and though he dislikes this, I think he sees it is how I am going to keep a balance in my own life. Thank you for writing - it's so good to know I'm not alone with this, and really good to see how denial is so helpful for the PWD while being such a strain for the other half of the couple. I hope you remain as clear and brave as you are now, and that you and your wife and family go on holding together. This was inspiring.
     
  20. canary

    canary Registered User

    Feb 25, 2014
    10,569
    Female
    South coast
    You have to get a balance @SaraKate
    You have to meet your husbands needs, but you also have to meet your own too.
    People with dementia often have difficulty seeing any viewpoint other than their own. I am not trying to minimise their distress, but it is no use a drowning person taking you down too. It is only when you are on a secure place that you can help them. You need your space, even if your husband cannot understand that you need it, so I am glad that you are continuing with it.

    Many people with dementia are unaware of their symptoms - even if they accept the diagnosis (and many do not), so they do not understand that problems are actually due to them. They may feel that Something Is Not Right, but think that this Something is other people, or their job, or circumstances and that if they changed it everything will be fine.

    You are doing OK.
     

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