Monday, January 30, 2012

mind games...the dementia lottery

I went to Newcastle on Friday to take my mum to her first appointment with the geriatrician. Some of you may know that dad has been diagnosed with dementia (in the mild category thankfully, at least so far) and my sister and I have had some concerns about our mum, especially since her surgery.
The good news is that mum only has “mild cognitive impairment” on the clinical dementia rating scale but there is a 50/50 chance of ‘crossing the line’ and joining dad within the next 12 months. Worrying, and she will be closely monitored by her doctor, but let’s take the glass half full view at this stage and hope for the best J
I suspect that in the next few years I am going to learn a lot about dementia. In a delightfully ironic twist, I have been doing some strategic planning work with people involved in dementia training for the health profession, so I have access to a mountain of information when I need it! 
Parents get old (if we’re lucky) and time and age can dull their senses and lessen their mobility. That’s normal. I am beginning to see firsthand that old truism about the parent becoming the child, and vice versa. This doesn’t bother me. In many ways I see it as an opportunity to repay my parents, to look after them as they’ve looked after me. As best I can at least. For the problem is this: I left home at 17 and I’ve never lived in my home town since. I've never lived closer than I do now. My holidays haven’t been spent in Newcastle, or rarely, so extended periods of time with my parents have been few and far between. Filling out the questionnaire at the doctor’s surgery was difficult. The checklist about changes noticed over the last 10 years was much easier to answer than what’s the last week been like? The simple answer is I’m not sure. There is only so much that a phone call or reports from neighbours and family who live closer can tell you about what’s really happening. And with a five hour road trip each way, weekly visits are simply not possible...not without me ‘running on empty’ (which was playing on the CD as I made the last trip!)  My sister lives in Perth, much, much further away than Canberra. We are faced with the ‘tyranny of distance’ in a very big way.
We have done what we can to put all the possible services in place to assist. The geriatrician knows where to find me and I'll be copied in to all correspondence. Power of attorney and enduring guardianship papers are being filled in. They are still very capable of looking after themselves at home (mum especially) but this will obviously get worse over time.
Does anyone have any experience with looking after parents who don’t live close by? Can you give me some tips, some strategies to make it seem a little more manageable? I’m open to suggestions!  And surprise,, they won’t move!

p.s. they'll turn 83 and 88 in a few months...they look good for their age don't they!


  1. Hi Kerry, I have no advice for you but I have to admit fear of watching my parents age. It terrifies me but there's nothing I can do to change it. Living do far away must be difficult for you but it sounds like both your parents are in great medical hands. I like your glass half full attitude. Have a relaxing week!

  2. Wow, they look fabulous for their age. Sounds like you're doing all the right things - and more. I know that this is in my future, with mum in Melbourne and Dad in Queensland, so it's something I've given thought to as well. Having professional guidance and knowing that you're there for them is the best thing you can do. Much love x

  3. Oh Kerry I wish I had some info to give you. All I know is the experience of Jason's family and in that case decision making was reactive rather than proactive...which is not an ideal way to do anything. It's a shame they don't live closer to you. xx

  4. Hi Kerry - It's hard going. I did move to live in the same city as my parents, but for the first year that my Dad had cancer I would try and come up to Brisbane fairly regularly for five days at a time. In retrospect, I spent some wonderful quality time with them, in ways that I don't now. That time also enabled me to get projects/tasks done in their home while I was there. Perhaps you could structure some extra leave into your year? More easily said than done, I'm sure ... Hope all goes well, Jenny

  5. Hi Kerry. I remember when I was little my nan (dads mum) lived with us for quite a few years - although at the time I had no idea why. It was just nice to see her. She had alzheimers and when it got really bad (either for mum who was doing all the caring for her while dad was at work, or whether it was just too medically difficult for her not to be cared for by professionals) she was put into a medical centre/home.

    I mention this because last year Dad was displaying symptoms of either dementia or alzheimers. We were all looking closely (probably too closely really) as Mum was quite worried. She would know more than us because she is with him all the time obviously. He eventually went to the doctors and they will be 'monitoring' him. We find if he gets out more - either in the garden or for walks - he stays a bit sharper, a bit more normal?!!

    My parents only live 45 minutes away but the stress and worry is still the same. I must admit to worrying most days when the phone rings (and as I work from home, the phone rings alot) that it will be bad news of some kind re: his health. So in that, I understand how worried you will be. I guess if you just keep up your regular contact with your mum, make sure all doc appointments are kept - and keep in contact with a neighbour of theirs - it might make this transition period a little easier.

    I guess when it becomes more advanced in either of your parents, both you and your sister will have to take the next step (whatever that is??) - and I really do wish you the best.

  6. It is a tricky and difficult time. So long as you have everything set up/support system, I think you will be right. ;-)

  7. Hi Kerry,.. hard one this is.. I'm in Brisbane and my mom (85) lives in Cape Town.. My outlook is to make the BEST of every day you can be together, make those telephone calls special, keep those Skype visits regular, write those emails/letters you've always meant to write, telling them of your gratefulness and thankfulness.. mail those presents, spoil them often, etc do the BEST you can do.. make every lunch you share very special, after all, we all only have this day as a certainty.
    I wish you well in your days ahead.. one step at a time.. and laugh often with them.. maintain your lovely humor,
    PS.. I love all your blue/white decor.. I'll be back to your blog.. my passions? What makes me tick?..

  8. Hi Kerry. This is not easy! My parents live in tiny costal village in SA with no services and I am in Victoria. My 90 year old father was caring for my 75 year old mother (who has dementia) until just before Christmas, when she went into full time care in a nursing home 40 minutes away from where they live as he was not really coping. For the 2-3 years prior they had amazing support from the local community health service, who for a very small fee would provide nursing and domestic assistance. I imagine that this is available in most areas. They have been great at keeping me posted on how they were getting on, if I rang my parents they would always say thing were fine so as not to trouble me. When Mum could no longer cook they were able to get meals on wheels too.

    It is an incredibly cruel disease. My mother was a woman of high intellect who used her brain more than most and is too young and physically healthy to be in full time care. But you need to be rational and what is most important is her safety and her health. I often feel helpless, as i am 3 hours away and have kids and a ridiculously busy husband, but the key is the support networks. Power of attorney is vital. Nursing home entry is a minefield and most people have no clue how to negotiate it until the time comes. You seem to have it all in hand! Good luck, and may your parents remain well. Jen.

  9. You've already got a fab approach Kerry. Perhaps an emergency call beeper wired to the ambulance if their physical health is a worry too? Or speed dial on a very large button on the phone keypad and an emergency drill. You could also quietly start looking at local aged care accommodation graded from independent to full nursing. A friend's parents, only in their 60s but one with high dependency health probs, bought into Goodwin Retirement Village early and are so glad they did. On-site support, social and small enough for them to look after. Appreciate though that your folks may want to stay in their family home. But there are often wait lists so it's sensible but wrenching to look at options early. It is hugely difficult. Best to pay heed to looking after yourself too. Oh, and pleease don't let them drive. That's my heartfelt contribution. Deb x

  10. They look GREAT for their age! What a lovely photo. It's a tricky one, and classic example of life coming full-circle. Rest easy knowing you've implemented a great initial strategy; and I agree to keep looking at the glass half full. Best of wishes. x

  11. ...and I don't suppose you will move either!!!!!!
    Kerry it is so difficult in these times when families are so fractured. My Grandmother always lived with us when I was growing up and her two other daughters were not that far away. We left Tasmania to return to Sydney to look after my Dad when my Mother passed away (He said he couldn't cope!) and then bless him he upped and remarried an old family friend within 12 months...but if we hadn't moved I would have been a very young widow as it was the Sydney Dr. who picked up Top's urgent need for a bypass!!
    Now I am the one that is too far away and I can not tell my children how much I need them.
    Would they consider a live in housekeeper?
    We have just helped in organising that for someone here, an ex shearers cook on the pension. In return for the accommodation and a small stipend she cooks, cleans and acts as a companion. It was difficult to find the right person but we did eventually.
    ...and now I know where your parents daughter got her good looks from! xxxx

  12. They do look good for their age Kerry. I am sure it is not going to be easy but I am also sure that you are equal to the challenge. She's lucky to have a daughter like you.

  13. Hi Kerry, My parents are exactly ten years younger than yours, and although they are both extremely active and well, I am starting to worry about all the things you're currently worrying about. Being with them over the holidays really brought it home to me - they're not young any more, and suddenly this was very apparent. I really like The Cape Clubs advice above to make the most of every opportunity. I need to do more of this that's for sure. I think you are doing everything you can do - and mustn't feel guilty about the things that you can't. And take things a day at a time.
    Amanda xx
    P.S They do look fantastic for their age. Hope those genes were passed on!

  14. Growing old can be so cruel and I can only imagine how this latest diagnosis has had an impact on you. My grandmother had dementia and it was very hard on the family, particularly my mum and uncles as she progressively worsened. I don't have any advice on the distance issue i'm sorry but send you big hugs xx

  15. Dear Kerry,
    They both look fantastic for their age and I hope that the dementia will make VERY slow progress. Both of our sets of parnts are gone now. They all lived very long lives. My Dad was 91 when he died three years ago. He spent the last eighteen years of his life in a nursing home. We were lucky that they all lived nearby but, it is a very difficult time , made even more difficult for you with the distance there is between you. As our parnts were close, I'm afraid that I can't offer you any 'distance' advice. All I can say is that you are doing everything possible ( and I know that it must be difficult)to help them both.
    Don't forget to take care of yourself too....that's very important.
    Look after yourself Kerry.....sending love to you and your parents from chilly old England. XXXX

  16. Oh Kerry, this is a tough one. I am sure you will be there for your parents when they need you and that they are happy and proud you are living your life. They probably hate the thought that they are causing you pain and concern. From their gorgeous smiles they look like a gorgeous couple. Hugs Deb.

  17. Very tough and I feel for you.
    My mother had Alzheimers and was in Perth and I live in Melbourne. I was lucky to have a saint of a brother there who looked after things.
    I took 5 weeks LWOP to help find and settle her into full time care (something she very much resisted), but, perhaps mercifully, her passing was hastened by the fact that she also had motor neurone disease.

    I was very grateful and glad I had spent the last weeks with her, as difficult as it was. I only wished I had been able to spend more time with her before she got sick.

    It sounds as though you are getting all the right things in place, and otherwise, I think researching care facilities in their area carefully is important, so that when the time comes for full time care, you feel confident to make a decision.
    We had found a place that was lovely, that had a spot for my mum, but didn't end up needing it. I felt it was important, as well as having the best of care, to have nice surroundings so that people would feel comfortable visiting her.

    Best wishes

  18. It's difficult to see your own parents grow old, I know it is for me as I want them to be young and fit forever (of course) but the reality is different...My mum is still young and well at 63 and dad at 72 is fighting cancer...he is full of energy still after going through radiotherapy and very determined to get better (not the other way around) I hope things won't worsen for your lovely parents who do look fantastic for their ages. I send you lots of love xo

  19. You don't realise how many people are walking in similar shoes until you read posts & comments like this. It is very difficult making decisions for elderly parents who are getting to a stage of frailty or illness, especially when you know it is tearing them apart not to have full control of their lives anymore, realising that although they are aging, somewhere on the inside is the same young person they have always been. I think changes are so much more noticable and dramatic when you have been apart for a while. The only advice I can proffer is to include your parents in the decision making processes for as long as possible, and although it is difficult, try to preempt what may be necessary for the future and discuss "what if" scenarios with them now, so that if/when decisions need to be made you will be able to confidently make your decisions based on what you you believe your parents would wish. Much easier said than done, I know. Best of Luck to you and your dear parents.

  20. Hi Kerry. I am 67 years old and have had tons of experience with dementia as I worked from age 14 to 24 in elder care homes where the residents were in all stages of dementia and/or full on Alzheimer. As well, my step dad, before he died was a brittle diabetic and an alcoholic and each time he had a diabetic reaction due to his over indulgence in the drink, he lost brain cells so that at 74 he was as challenged as any 94 year old. He was in his own home and as long as he was on his own "turf" his routines kept him going but taken out of his "comfort zone", he would be disoriented and restless. The matron at the care home I worked at when I was in my teens taught us that as we aged one of two things would happen, we could deteriorate in our mind and/or in our bodies. She said that her experience was that those who were not fit physically struggled because their minds were sharp and they were frustrated by their inability to do physical things that they did in their youth. Those who had dementia on the other hand seemed for the most part happy. My Nana had Alzheimer's and she was as fit as a fiddle physically. She walked around the elder care home she was in, could be put at any task and with supervision could finish it and lived to 90, seemingly happy. She also had moments of clarity which we celebrated. I know this is a hard time for you and your sister and I'll bet your folks would rather stay where they are rather than move and wouldn't want to disrupt your lives by having you move to where they live. So, for now, what you are doing is all you can do. As time goes by a care home situation may become necessary and now, while your Dad is still competent is the time to discuss that possibility and ask him what and where he would like to go. Both of my folks are gone now but I found, especially with my Dad that I spent the time I spent with him doing what could be done, one afternoon in his messy, (can you say an episode of Hoarders) basement with him and my then 14 year old grandson, playing all his very old records, singing and dancing and laughing and that memory lives with me still. Good luck sweet girl, bless you and your parents and as we say here in Canada, today, don't go to Newfoundland when you only had to go to Duncan!!! In other words, one day and one step at a time. Cheers as always from the west coast of Canada.

  21. I wish I had some advice to offer darl, but i'm in the same boat as you. and sadly was too far away for my dear old dad. BUt mum is still kicking on. Luckily i have siblings that are close, and i'm greatful for that.

    But one thing i know is that you're a smart, resourceful cookie and you'll figure it out. I've really enjoyed reading the ideas from everyone above. xxx

  22. Hi Kerry,
    Sorry to say that i dont have experience to dole out, it's a learning game i think. Your parents look good! All the best to you as you proceed through this challenge. xo

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