1. Sandy

    Sandy Registered User

    Mar 23, 2005
    I chose the title of this thread (‘Catching Up’) partly to reflect an update of my family’s circumstances, but also because I felt that we were now catching up with some on TP who were further down the dementia road.

    I thought about this title three weeks ago when my father-in-law (nearly 88, suffering from mixed dementia – Alzheimer’s and vascular – diagnosed over three years ago) was admitted to hospital following a fall.

    The past few years have shown a relatively slow decline, with my FIL being cared for at home by his wife (herself 84) with the assistance of carers every morning. We’d noticed that he had started to become even more confused in the last three months or so.

    Also, my MIL had started to show some signs of dementia herself. My husband took her to a memory clinic appointment about 6 weeks ago where she scored 21 on the MMSE and the doctors thought that she might be a good candidate for medication (following a brain scan that has yet to take place).

    We live about 75 miles away and my husband is their only child, so it has always been a bit of a balancing act, even with the help of carers and neighbours.

    After a week in hospital, my FIL was declared ‘medically fit for discharge’ and we were contacted by the hospital social worker(SW) on the discharge team. We had already decided that my MIL was not coping well and that a local care home was the best option.

    Once the SW had established that we were self-financing she was keen to let us get on with it, but when asked for a list of suitable local homes with vacancies she did email me a list. Luckily we had looked at a number of homes two years ago, and even put his name down on the waiting lists for a few. We saw this as a no obligation ‘insurance policy’.

    After spending a day on the telephone, I had established our top three homes with vacancies which would be willing to assess him in hospital. We had been told that he needed EMI residential care, not nursing care and did not qualify for NHS Continuing Care despite also having myeloma (a type of cancer).

    Our first choice home rang after seeing him in hospital (the morning we were due to take our 12 year old daughter to London for a birthday treat to see Phantom of the Opera – booked months ago) and said they felt he needed nursing care and could not take him. This led to more questions to the SW about nursing care, but it was stated that he had not been assessed by the ward as needing nursing care.

    If someone is assessed as needing nursing care the NHS contributes £100 to the care home to cover the cost of this medical need. We decided to go ahead and find a EMI nursing home and not worry about the cost implications. We could always ask for him to be re-assessed once settled in the home.

    Luckily we did find a lovely EMI nursing home not too far from my MIL which assessed and felt that they could meet his needs. We really wanted to find some place that could truly be a ‘home for life’. He moved into the home on Friday evening and we were planning to visit with my MIL on Sunday (yesterday).

    This was not to be. We had a telephone call from the home manager at 11.45pm on Saturday to say that his breathing had become irregular and he had been transferred to hospital. He died shortly thereafter – quickly and peacefully we are led to believe.

    So now we are working on organising all the things that accompany the death of a loved one – something new for both my husband and I.

    Our focus now is on supporting my MIL and making her life as enjoyable and comfortable as possible. The extent of her dementia (which may be mostly vascular) has been shown to be much worse than we expected as she has had a hard time remembering my FIL was no longer living at home over the past three weeks:eek:.

    We now move onto the difficult task of supporting someone with dementia living alone from a distance. My MIL has sounded positive about the prospect of moving to Cambridge into some sort of sheltered housing scheme, or possibly a residential home (licensed for dementia care).

    Can I just say that during all the ups and downs of the last three weeks, I drew tremendous strength from the stories that others have shared on TP and I knew that we were not alone.

    Sorry that this is so long, but I kept waiting for things to ‘settle down’ before posting. I think settling down will now become a relative term.

    Take care,

  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Sandy,
    Please accept my deepest sympathy on the death of your father in law.
    You have always written such supportive posts to others and never asked for yourself, I think this is the first I have had any indication of your caring situation.
    I do hope your mother in law will be able to move nearer to you and your husband. It will make life much easier all round.
    Take care xx
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Sandy

    Thank you for your update. It's so helpful for us to understand.

    I'm so sorry about your FIL, it must ahve been such a shock for it to happen so suddenly. But perhaps for him it was a blessing, he is now free from his problems, and at peace.

    Which leaves you with your MIL. I hope she will be able to accept, and hopefully forget, that her husband is no longer with her.

    It's a good idea to move her closer to you now, and I'd suggest a care home rather than sheltered accommodation. SAs are not really geared up to support someone with dementia, and she would probably have to move again within a short time. I hope the meds are effective for her.

    A sad time for you, and so much to come to terms with. Take care of yourself as well now.

    Love and sympathy,
  4. germain

    germain Registered User

    Jul 7, 2007
    Hello Sandy,

    So sorry to hear about your FIL. Such a shock to all.

    Just to second Skye's comment about sheltered accomodation - you could find yourselves having to do two moves very quickly.

    We found our Mum the most wonderful assisted living flat but she just couldn't cope at all - we now know she had mixed vascular and AZ and with each TIA came a fall - and the carers weren't allowed to lift her so it was paramedics each time.

    So a few months later it was yet another move into a CH - horrific stress for us and I'm sure extra confusion for her.

    Hopefully if you move MIL into a good care home near your family she will have to time to enjoy and appreciate her new life before her dementia progresses too badly and you will all be able to enjoy visiting and supporting her without the continual worry.

    Also - and sorry to appear "cold" at such a trying time for you - you need to think about your own family and its future - a 12 year old is going to be a teenager soon ( oh please - anything but that ) so if you have the chance to make things easier now then grab it with both hands !

  5. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    Dear Sandy

    What a sad time that you are having at the moment. So much to organise and deal with as well as getting to grips with your MILs diagnosis. It must come as such a shock to see the sudden deterioration.

    I would echo Hazel's & Germain's view that a care home might be the best option for your MIL, as close to you as you can manage. Any move leads to confusion I found with Mum and dealing, as she will be, with the changes will heighten this. A good care home registered for EmI will provide her with security and stability and 24 hour care which will ease the burden gently from your shoulders in a way that SA just cannot do.

    Good luck for the future. It is not easy dealing with your children and your parents.


  6. connie

    connie Registered User

    Mar 7, 2004
    Dear Sandy, thank you for thinking to update us on your ongoing situation.

    I am so sorry to read about you father in law. Please accept my sincere condolences.

    You words:
    tell us a little about the daunting situation you now face, and yet you find time to tell our members what comfort you have found from the forum. Thank you.

    I do hope that things 'settle' well for you, MIL, and the rest of the family. Please post if you think anyone can help in a more positive way. (You have always been so supportive yourself)
  7. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Dear Sandy,

    I was sorry to hear of your FIL's passing. Please accept my condolences.

    I have no experience of moving someone with dementia, but I do see the wisdom in what the others have posted. If your MIL is prepared to accept a move to residential home now rather than to her 'own' accommodation, this may save you, and her, upheaval in the future when she may have deteriorated and find things more confusing.

    Please keep us posted as to how you go on.
  8. gigi

    gigi Registered User

    Nov 16, 2007
    East Midlands
    Hello Sandy,

    What an awful shock for you and your family.Please accept my condolences.

    It would seem to make sense to move your MIL just the once..it's a fact with Dementia that no-one knows when the next step down will occur.

    I hope you find somewhere suitable and things settle down a bit for you.

    Take care.

    Love Gigi xx
  9. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Hello Sandy,
    Pelase accept my condolences about your father-in-law's passing. What a shock it must have been.

    I agree with the other posts that one move to a care home would be better than a move to sheltered housing and then perhaps in only a few months another move. When I had to move my mother, the specialist advised me to make it only one move, if at all possible, as that would be the best for my mother.

    Sylvia is right - you have always been so supportive of others.
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    #10 Margarita, Apr 1, 2008
    Last edited: Apr 1, 2008
    I am also so sorry to read that your father in law , pass away so sudden . I know it must of been a shock to you husband & yourself also to your Mother in law .

    Just drawing from my own experience when my father pass away , my mother went into a deep shock was in the early stages of mixed vascular and AZ, that I had thought that she no longer remember my father , but it was more to do with the shock not that she did not remember my father , just was all to painful for her that she would rather not talk about him , she could of just been blocking it because its all to emotional painful for her to talk about it, grief does strange thing to people let alone someone with a dementia

    So if you don't mind me saying & of course every one different don't be fooled that just because she has mixed vascular dementia that she does not remember her husband .

    A move after my father death , gave my mother a decline in her dementia that I thought she would never recover, but she did with medication she did , but I am 100 percent sure that without medication for AZ , my mother would of never received from losing my father , because to my mother life was not worth living without my father around . he was her life .

    If you think about it someone that been married for years (my mother case 55 years ) even with out a dementia

    It take a good 5 years to recover from the grief , let alone some with a dementia . my mother only now 6 years after my father death can talk about him , but she still misses him deeply , but she has not forgot him , nor has she forgotten that his dead .

    I agree also care home would be best . but a decline may still happen but with both of you giving her TLC she be OK

    how old is your MIL how long was she marry to her husband ?
    will she still have any medication for AZ when in care home ?
  11. hendy

    hendy Registered User

    Feb 20, 2008
    West Yorkshire
    Dear Sandy
    Please accept my condolences to you and your family following the passing of your father in law. I'm so sorry you have such a lot to organise and come to terms with so quickly. You have been given such good advice by everybody so far. I am sure you will be able to decide whats best for your MIL.
    take care
  12. Sandy

    Sandy Registered User

    Mar 23, 2005
    Dear All,

    Thank you so much for your thoughtful and practical responses. Your messages truly reflect understanding based on shared experiences.

    We were surprised by the sudden nature of my FIL's death but today as we were making funeral arrangements, we felt that was possibly a blessing as he is now at peace and we can concentrate on my MIL's future needs.

    Thank you everyone for putting me off the sheltered accomodation route (germain - your post did not strike me as "cold" in any sense - saving people from future disapointment can only be described as compasionate).

    Over the next few weeks my husband and I will look into local homes. I picked up a glossy brochure from one home today (10 minutes walk away - part of a chain with a four-letter name) just to see how my MIL would react to the scenes of ladies like her dining together and arranging flowers. Her initial reaction was positive and I think she would welcome the chance to looked after herself, having had the burden of caring for the last three years.

    Also, as my husband Tony stayed over on Sunday and Monday night, he was able to see how she was managing at the moment. The changes over the past three weeks have definitely worsened her condition (thanks for the background on your mum Maragita - it could be quite similar as my in-laws were married for 56 years).

    At one point (talking to me on the phone at 6pm - sundowning time) she must have thought that Tony was her husband as when I said that he would coming back to Cambridge on Tuesday, she accused us of being in a "secret marriage" :eek:. When I asked her about the pictures of our daughter all over her house, she said she thought that Katie was my sister - cue Twilight Zone music!

    Having read posts on TP about the delusions that can occur in some people with dementia I knew that this could occur, but I was shocked to actually experience it. This was classic confabulation - making up details to cover gaps in memory.

    When Katie and I turned up today she knew who we were and we all had a good day together. I think that moto of Norman's "day by day" is one we will be living by for some time to come.

    Take care,

  13. daughter

    daughter Registered User

    Mar 16, 2005
    Dear Sandy,

    I was so sorry to hear about your father-in-law, it must have been a shock, and then to find your MIL has dementia... The delusions are certainly something to experience! Even after being prepared for some of the things that might happen, it's always a shock to see them manifest in front of your eyes. I wish you well in your search for a home and I do hope you will have many more good days to come with your mum-in-law.

    Best wishes,

  14. Sandy

    Sandy Registered User

    Mar 23, 2005
    Dear Hazel,

    Thanks for your thoughts - it's really nice to see you on TP (even if the circumstance could be better).

    We have started looking around at care homes in Cambridge and seen at least two good ones. We're looking for homes that have both residential and EMI wings as she probably is just in need of residential at the moment, but will need EMI at some point.

    I did explain to one manager of a residential unit that she does have moments of confusion, but scored 21 on the MMSE and he thought that was pretty good for her age. Of course, there would have to be a proper assessment before any trial placement could take place.

    Looking around many residential homes it would seem like more than one or two residents suffer from mild dementia, but as long as their behaviour is within a certain range (no wandering, no aggression, etc.) they are able to fit into the home.

    Things are moving a bit more slowly regarding the organisation of my FIL's funeral. The GP had seen him three weeks before he died and didn't feel able to sign the death certificate, so a post-mortem had to be carried out on Wednesday. That did not reveal the cause of death, so they will be performing tests on tissue samples next week.

    I'm sure this is largely routine but it was a little unsettling to contemplate.

    Take care,

  15. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Sandy

    I'm sorry you have this extra upset to contend with.

    I know they're extra careful over the unexpected deaths of old people these days, but surely given your FIL's age and condition, common sense might prevail?

    I hope you get it sorted soon. It sounds as if you have some good possibilities for your MIL.

    All the best,

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