Monday, 17 February 2014

Butterflies.....

Nana has Alzheimer's Disease and we can see it progressively getting worse.  Her memory is now very short term (probably less than 10 minutes on some days).  Because we have a young family and Nana and Pops live about 10 miles away, we can't pop in easily to see them.  10 miles isn't really that far but, when you have a baby who still naps and a school run either end of the day plus tired and grumpy children after 4pm, it makes it hard to visit during the week.  It's an understatement to also say that their house isn't really suitable for a young toddler.

We are now experiencing one of the additional challenges of having a family later in life as life becomes more challenging for Nana and Pops yet our time is limited because of our childcare responsibilities and routines.  Also having adopted children complicates the situation because routine is important for our family's well being.  Pops is Nana's primary carer but his health isn't fantastic either.  He is now 10 years post a double lung transplant and his recent hospitalisation for heart failure has left him weaker then he was before.  He admitted to us that he was finding it difficult to cope now so some action is required.

The disease is stripping away Nana's personality as well as her memory.  Nana has always had an edge to her personality but she was able to monitor what she said (mostly).  That has now been eradicated and Nana is often very similar to Katie from the perspective of emotional development and literacy.  It's incredibly sad to see this happening and also incredibly difficult to manage because she is now very child-like.  What's making the situation harder from our perspective is that Nana seems to focus all her negative behaviour on Katie.

Katie is a child who finds it hard to accept our authority at times.  She is strong willed and wants to do what she wants to do.  A fairly typical 6 year old in many ways but there is a bit more to it with Katie I think.  At this age they are pushing every boundary they can find and challenging the authority of their parents in mostly obvious and unimaginative ways like shouting and refusing to do what they've been asked.  Add to this the fact that Katie finds it hard to sit still for long and isn't that fussed about eating.  Imagine our dinner table at meals times with that information in mind.  It's been a challenge, it's fair to say.  Nana can no longer understand how we manage Katie at the table so spends an entire meal when we get together glaring at Katie saying things like....

"Can't you sit still"
"Will you just eat your dinner"
"Oh for goodness sake"
"Oh I'm going home if you can't behave"

These are fair points in the general sense.  Nana comes from a generation where children were seen and not heard and it must be strange for her to see us seemingly ignoring unacceptable behaviour.  I often feel the same about Katie's behaviour at meal times but we have a strategy in place that works for us however Nana forgets that she's said these things and repeats them over and over again.  It's incredibly stressful and I'm strung as tightly as an elastic band by the time Nana goes home.

Katie responds to these comments with defiance.  It makes her behaviour worse.  She doesn't like being told off by Nana so intensifies what she's doing and will answer back.  This obviously exacerbates the situation.  I feel my stress levels rising because I'm not going to allow Katie to feel bullied in her own home but if I say anything to Nana a) it's a moot point because she'll forget in 5 minutes and say it again and b) she's likely to stomp off and put her coat on to go home.  I do intervene though if I think things are going too far, which generally makes me public enemy No 1! 

We've tried rearranging the seating so that Nana isn't in Katie's line of vision during mealtime but I do think Katie tries to goad her a little so that hasn't really worked either.  She'll mess about and climb up and down her chair and generally do everything she can to gain attention.  A sensible person might say to avoid having meals together but there is also Pops to consider.  Why should he have to miss out on one of our wonderful meals too?  That feels very unfair to him.  What makes the situation even worse is that Nana idolises Pip and he can do no wrong.  One thing I did try with some success this weekend was to ignore the fact that Nana put her coat on.  We just carried on as if nothing had happened - a bit like we do with Katie when turning our back and ignoring unacceptable behaviour.  Eventually (and sadly) she forgot why she was wearing her coat and took it off again and re-engaged with us. This happened twice more but it did seem to work and I think we'll try this again on the next visit.

A difficult incident happened recently on Nana's birthday when me and the children went to visit with a present and birthday cake.  Whilst we were there Katie was playing with one of those collapsible toy donkeys. Nana said that Katie could keep the donkey so Katie was really happy and excited.  About 15 minutes later as we were getting ready to leave Katie went to pick up the donkey to take home and Nana virtually accused her of stealing it.  Katie was totally confused and upset.  When it became clear that Nana wasn't going to allow Katie to take the donkey I delicately tried to intervene and explained to Nana that she had said that Katie could keep the donkey a short while earlier.  Nana then got really cross and turned her back and refused to speak to anyone.  We had to leave minus the donkey (although Pops has since brought the donkey over to Katie hidden in a bag of sweets, bless him).

I've been trying to explain to Katie about Alzheimer's Disease.  It's hard to help her really understand it though.  She just sees that Nana is being mean to her and that she feels hurt and upset.  I obviously want to protect Katie from feelings of being rejected.  I feel she's going to potentially have enough of those feelings to overcome as she gets older depending on how she feels about being adopted as time goes by.  I downloaded a book called Grandma Rose: A story for children about Alzheimer's by Jocelyne Pouliot and read it with Katie.  It is a simple book that explains Alzheimer's impact on the brain behind the forehead that effects personality and memory and compares this gradual decline like a rose petal slowly losing its petals.  It's emotional and I had to read it alone and have a good cry in the bathroom before feeling able to read it to Katie without crying again.

We've also played memory games to try and empathise with Nana.  I tell Katie something I am wearing and she has to remember what I said when I ask her the question "What am I wearing?" later in the day.  I explain to her that Nana wouldn't be able to play this game because she wouldn't remember what I was wearing.

At bedtime after reading the book Katie said to me that she doesn't understand Alzheimer's and could I explain it again please.  I thought for a moment and said that I think that our memory is a bit like a butterfly that lands on our head.  We are able to hold onto the memory of the butterfly but for Nana the butterfly flies away taking the memory with it.  Katie liked this analogy and it seems to have helped her a understand it all a little better.

Alzheimer's is a sad and cruel and debilitating disease. It's painful to watch the person you know slowly being eroded.  It's horrible to watch the memories fade and be unable to help.  Nana still knows who we are at the moment but that will change.  The hard thing is that Nana doesn't realise that she is unwell because she doesn't remember when you tell her what has happened to her.  I've explained about Alzheimer's to her on several occasions and tried to empathise with how scary it must feel but the conversation flits away as soon as we've had it.  Pops is now finding caring for Nana more challenging and it must be awful to be on the receiving end of constantly difficult and challenging behaviour particularly when you aren't well yourself.  It must be awful to watch your marriage disintegrating at a time in your life when companionship means everything.  I feel sad for TCM who has realised he will never have his mother back as she was again and I think it will be a slow mourning process for him.  Unfortuntately we cannot have Nana to live with us with the children around.  I think it would be too damaging for everyone so we are looking at care arrangements (made more difficult because Pops cancelled the nurses I had going into Nana when he was in hospital!) to help out at home.  The GP has been brilliant and are taking our concerns seriously.  I have asked for a medicines review to assess the level of morphine she is taking for osteoarthritis with a painful curvature of the spine.  The morphine exacerbates her confusion unfortunately so a balance of her medication is vital.  This review has been undertaken and her morphine doseage reduced.  I am also going to contact the Alzheimer's Society to see what information and support they are able to offer our family to help maintain Nana's life and dignity for as long as we are able to but there's an inevitability as to how long Nana will be able to remain at home.  

I would be very grateful for any tips and advice from any readers who have experienced this illness within their own family.  Please comment below or contact me via email at threebecomefour@gmail.com. 




14 comments:

  1. You write about this with such sensitivity and I can almost feel how you are being torn apart by all the roles you are having to play, and all the things you'd like to do to help but just can't. This is so incredibly sad, as you say. I'm sorry I don't have any advice but I send you my love and admiration for the way you are handling this. xxx

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    1. I just want to say thank you for your lovely reply. I do feel torn apart and anxious to know how best to handle things. That's what makes me feel sad really is that this becomes a problem to "handle". Having to make big decisions for another adult human being is a really hard and sad thing to do. xxx

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  2. Oh my how very stressful and awful for you all, I too can feel the pain this is causing you. My nana had Alzheimer and I try not to remember her as she was in her final year because it really wasn't her. It sounds to me like you are making an amazing effort to cope with this the best you can. I really don't have any advice either but be sure that you are doing an amazing job of caring for your family. xxx
    Thank you for sharing on #WASO

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    1. I'm sad to hear that you've also experienced this awful disease and sad for your loss and I can understand why you don't want to remember your Nana as she became. It's a loss of so many things. An Aunt of our died 20 years ago now of a brain hemorrhage and it took me many years to forget how she looked in her final week of life. Now I can remember her fluffy jumpers and eclectic dress and how much she loved John Lewis and not see the image that haunted me for a long time. I am very spiritual and feel strongly that our loved ones would not want us to dwell on the illness that took their lives but the person that they were and remember all the ways they influenced our lives. xx

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  3. It is incredibly difficult. My Mum coped for over 5 years as main carer for my paternal grandmother who has vascular dementia (so similar condition). It was hard watching the independent lady I knew (and was very close to) go - as DH puts it he never really knew the person I speak of so fondly. She had respite from time to time and Grandma went to a memory club most weeks. But it was very hard watching the deterioration. In the end Grandma had to go into a home as Mum could no longer cope (my grandfather died in 2002) and she passed away last June so never knew she had become a great-grandmother twice more.

    The important things for my Mum was the respite and help and admitting when she couldn't cope any more - Grandma went into a home the specialised in dementia at this point.

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    1. I have enormous respect for your Mum. That must have been exhausting and a real labour of love for her. It must have been so difficult for you all to watch her deteriorate and try to hang onto the memories of the person she was. Thank you for sharing your experience with me and for saying that the memory club was helpful. I do think we need to ensure Pops has respite as I worry about the impact on his health and wellbeing as well. What worries me is that Nana won't go. She is so introverted at the best of times and the illness is making that side of her personality worse. I hope we can convince her to go and try these things out. Thank you again xx

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  4. Oh that is so hard for you, and your family.

    My mum is currently in a hospice, and we are looking for a nursing home where she will likely end her life. She does not have Alzheimer's, but COPD, which has resulted in frontal lobe atrophy. This means she has increasing problems with short term memory loss. We've also had to have the same conversations about her oramorph, which we feel causes her greater confusion. She has lived (sort of) independently, but with carers coming in 4 times a day plus a family member having a meal with her at least once a day.

    I think getting your pops to access carers coming into the home daily is really important. Even as a healthy absent carer it is hard hard work, but being ill yourself and having it 24/7 must be incredibly hard. How does your pops feel about your Nana going into residential care? It may not be yet, but as you say, it will come and planning now might make it a smoother process. (God it's awful isn't it).

    I don't know what to say about Katie, other than what you know already, that you need to protect her from harm. I do think, from what you have said here, that there could come a time when you really have to limit the contact between them. I cannot really take little miss to see her grandma anymore, as myum just can't cope with how quick and unpredictable she is :-(

    One other thing that we have agreed (between my mother's daughters!) is that no one accepts any gifts from our mum .. She does forget, and 'gifts things' to different people. We have just decided that it isn't fair to accept things when she can't remember giving them. We have included all the grand children in this and when she has said they can have something, we say that it can stay at hers for them to use there,

    It is a really really tough situation to be in. Take care of yourselves Xxx

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    1. Hearing where you are at the moment just brings tears to my eyes. It must be awful to go through all this with your Mum. I don't have my mum around anymore and have become used to being the grown-up now but it's hard going through that transition and being the last line of defense as an adult. We've now had a prescription review and the GP agreed with the Pharmacist about the Oramorph and Zomorph so thankfully the doses are being reduced. I hope this will help Nana and enable her to remain in her home for longer. It's hard to know when that time will come that she will need residential care and I'm really not looking forward with any sense of anticipation because it must be simply awful but I imagine there is a knowledge when the time is right that it is the right decision? We have started to talk with Pops about power of attorney to help make decisions when we need to and have agreed that TCM and Pops will share that.

      I really appreciate hearing what you have said about little miss and limiting contact. I have broached the subject of Nana going to respite and Pops coming for lunch on his own and he is agreeable to this. It makes me feel like I'm betraying her or pushing her aside, which is furthest from the truth in reality, but I do think it might be best for everyone in the longer term. Thank you also for the idea of not accepting gifts. That is a brilliant idea and one that I've already discussed with TCM after reading your message. Thank you for that.

      I send lots of love to you as you go through this awful time. I really do feel for the position you find yourself in and can imagine how painful and stressful it is on you all. xxx

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  5. I think you are approaching the whole situation so fantastically. You seem to be handling the whole situation so gracefully and I'm sure it's not all as logical and easy as you make it seem in your writing. I don't have any advice or experience to share, but I'm sending love your way.

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    1. Thank you Lindsay. I really appreciate your reply. I suspect the only place I ever make any sense is here on the blog - and that's not always the case here either LOL! I do find the writing down of experiences helps clarify things though so often feel I have a greater perspective on things after I've written about it. Thank you again. xxx

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  6. This comment has been removed by a blog administrator.

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    1. This was a duplicate reply so have removed one copy - I didn't want anyone to think it was anything inappropriate. Gem xx

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  7. I have so much admiration for you. Not only have you managed to write such a beautiful and sensitive post but you are doing a fantastic job supporting your family under very difficult circumstances.
    For several years before I met Bumble, I worked in a nursing home that specialised in Alzheimer's and where I cannot give you any advice (only you can know what and when it is the right thing to do), I can say that I understand how difficult and heart-breaking it must be for you all and say "you are doing a great job"
    Katie, Pip, TCM and your In-laws have a pretty special person looking out for them xxxxx

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    1. I think you must be a pretty special person to be able to work in a caring role for people with Alzheimer's because I know how difficult their mood swings can be and it must be hard to build up a relationship with someone when they often forget who you are. Caring is often so much about the relationship so I think that must have been a tough job at times. Thank your for replying. If there are any tips that you found worked well then I'd love to hear them. xxx

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