Kia ora e te whānau,
It has been a while since I have updated this blog, things have been increasingly busy and unfortunately stressful. This year has seen many ups and downs, one was having to move from the home we had been in for 5 years. Fortunately, we found a beautiful new home within our price range, in the same area we were living in. It is a beautiful house with wonderful views and lots of lovely birds.
However, what I wanted to write about is the recent predicament I have found us in, our funding with the ADHB came up for review in August, for the past 5 years we have had access to 52 days of respite which was partially funded. I was able to afford the partial funding and made it work. This year the ADHB made the decision to reduce the number of days of respite we have available and increase our cost, thus making respite unaffordable. For mine and Martha’s safety and wellbeing access to respite is crucial, having the ability to have a night or 2 off here and it is invaluable, and the thought of not being able to access this is very scary.
So after some consideration and lots of talking I created a give-a-little page to ask for a little help from our amazing community. I now have between a $60 and $200 shortfall for every day I get respite for Martha, ideally I have upto 4 days a month to have for myself and to do things I need to do. Whilst I can maintain this cost for the next few months by using our savings it is not sustainable over the longterm. I do hope that next year I will hopefully be in a better financial position, but for now I need to navigate the next few weeks of caregiving.
So here it is, I am asking for support to raise around $2000, this will get us through to the next few months and then we can reassess. It’s hard for me to ask for help and so I feel proud of myself that I am reaching out and asking. Everything and anything helps, I am so grateful for all the support thus far and I wish I didn’t have to ask, but I do believe that caring for Mama at home is the best option for her and her quality of life.
Thank you so much for the ongoing support! Always with Love, Kyrin and Martha xx
In 2013 I had my first experience of grief, true, moving, heart-wrenching grief. It was a time in my life where I wasn’t sure if I could carry on. Simultaneously I became a carer to Martha, I supported her through her grief, I remember on the 2nd morning of Dad passing, his body laid out and Martha nestled against the coffin, she woke up in shock, confused about what had happened, needing explanation. I had to tell her, yes, what she knew in her heart was true, her husband had passed away. Over the next few months, we journeyed like this, dancing with grief and loss. I explained her husband died, she cried, she forgot and so the cycle repeated. I didn’t do my grieving until early 2015, I lost a job and everything came to a head. My heart was imploding as I faced this impossible task of life, up until this point I had a purpose which was wrapped up in my monetary value, without that I knew nothing of surviving life. I had been reduced to my carer identity, I was an unwilling participant in the caregiver role, and now I had found myself in that role permanently. I survived the grief, I grew from the grief, I journeyed in the grief and found the parts of it that made me who I am, I believed I would not face grief again until Martha left this earth.
Over the years I have learnt to manage my grief and sadness with Martha, when I smile she smiles, when I laugh she laughs, when I’m angry she is angry, and when I am sad she is sad. She is overwhelmingly sad, her eyes tear up, her bottom lip drops, she is confused and heartbroken. She absorbs emotion like a sponge, I reserve my tears for quiet moments alone, showers, bed, car rides alone. When news began to break of the March 15th terrorist attacks I could not contain the grief. It spilt into every part of me, leaking out in sobs, tears, uncontrollable rage. I was heartbroken, devastated, cycling through the stages of grief. The world as I knew it was changed forever and I could not stop the tears from flowing. Martha cried with me, not knowing what the tears for her, her heart ached, her soul bled just as mine did, I could not contain the devastation that was erupting and I could no longer protect her from the grief. The common misconception is that people with alzheimers have no worries, don’t experience the same things we do, this, in my experience, is not true. Martha feels everything, she absorbs the happiness as well as the sadness. She can’t translate anything into words but she transmutes pain into love. The beauty of having no judgement, no hatred, no thoughts is that life is lived on a wairua level. Grief is a time when I can’t hide my emotions, instead of holding so tightly to them I have begun to let go. I wrap my grief tightly around me, keeping it safe from Martha, but as I learn and grow in my emotional capacity, I am learning to allow Martha into this world, to use her superpowers to transmute pain into love.
Always with Love,
Today I picked Martha up after a 5-night stint in respite. It is a funny space respite because on one hand, I feel relief from the day to day pressures of being on a caregiver, but that is quickly replaced by the anxiousness of the quality of care in her care home, by worrying if she is ok, if she is being treated well, the list is endless and all-consuming. Picking her up from respite brings about the relief of one anxiety and is replaced by the next. It is an endless cycle.
Back to my original point, today I picked her up. And within the space of about 3 hours, she has had 3 bowel movements. THREE BOWEL MOVEMENTS! Hence the title, dealing with S**T.
Dealing with an adults bowel movement is one of the most challenging experiences to date, there are many ick factors to it, a lot of disinfectants and many many showers. It is one of those things where just when you think life couldn’t get any harder, life literally shits on you. In everything there is always a learning moment, whether that is learning the limits on what you can handle, learning boundaries, patience, kindness in the worst moments, there is always a learning. Today I learnt that I am more resilient than I thought I was. Today I learnt that no matter what if shit happens you always keep cleaning it up – regardless of how tired, lost, grumpy you are. Today I learnt that having lots of gloves/plastic bags (biodegradable of course)/disinfectant and spares close is going to save your life. So here is a list of tips that will help you if you are in the same situation!
- Get yourself some disposable gloves and get lots of them. This was something my dear friend Hana told me many many moons ago, I will never ever forget the sense of relief at how practical this tip is.
- Keep plastic bags everywhere, you never know when you are going to need them, they are hand for so many things. Not only keeping soiled clothes/diapers but also as makeshift seat overs and protecting yourself from yuckies.
- Always keep candles/incense handy. Seriously, this has saved me countless times. I now burn incense every time we have a bowel situation. It keeps me from throwing up, it’s like an added layer of protection.
- Don’t be too hard on yourself. If you have to leave the person you’re caring for in the shower for a few minutes while you step out and get some fresh air. DO IT. This is a terrible situation and in all of this, you gotta do you.
- Treat yourself to some really good smelling hand soap and hand cream. After all this your hands are going to be wrecked, I wash my hands what feels like 100 times after one these times, so having nice smelling soap and hand creams have been a lifesaver.
and last but not least…
- Take care of yourself… be kind to yourself… because you are doing great!
Always with Love,
It has been a while since I have written, I have a lot of half written pieces of prose. I have been dealing with my own depression this year, as I move forward in my life with my study and career, Martha’s life is really slowing right down. I have had a hard time coming to terms with that. As I have said many times before I know the outcome of our situation, one day Martha will no longer be in my life (in physical form) and now as we almost complete our 5th year in this role reversal it seems even more unimaginable how I will continue to move forward without her.
But this post is not about that, I wanted to share some updates with you on Martha’s progress. While I may going through my own depression, Martha continues to thrive in her happiness. In our nearly five years together as caregiver/cared for this is probably one of the consistently happiest times of her life. Her smile lights up a room, her hugs connect you with the spirit, her comfort soothes the soul, her compassion and empathy heal. She is truly filled with Love, and all she has to offer is Love, sometimes I feel so undeserving of her Love as I force her to shower, or eat something she does not like. She has no capacity to hold a grudge, to want revenge, she is always present with me.
On an external level of progress, her Doctor’s are really happy with the way she has progressed. While she has lost a lot of her speech and isn’t able to have a conversation, she still understands and recognises people, is no longer having delusions and hallucinations and really has no other health concerns. She like a lot of 70-year-olds is slowing down as a part of ageing but otherwise, she is healthy (that we know of).
One of the trickier aspects of Alzheimer’s has been the medical stuff. Finding out the underlying cause of infection is not as simple anymore, and I have had to find my voice when it comes to advocating with Martha. How do you give consent for someone who doesn’t know what is happening? Will this procedure improve their quality of life? About 18 months ago we had a situation where her blood tests continued to show abnormalities, we were told she potentially has cancer. After much consideration, I decided not to proceed with any further testing because… what would be the point? The Alzheimer’s would not improve and possibly be made worse by the invasiveness of testing, and how would it affect the care I am able to give? Here we are now, her health has not decreased, she is not suffering, she is happy.
She is happy, and we are happy. A few years back I think I enjoyed the
pity sympathy that others would offer, I would get a lot of “you’re so young to be a caregiver..” “I’m sorry this is happening for you..” However, over the past few years, I no longer view it as that and feel a sense of anger when people offer me their sympathy. Don’t feel sorry for us, yes, Alzheimer’s does suck ((it’s the fucking worst)) but it has also afforded us many wonderful opportunities that we otherwise wouldn’t have had. But I will save this for another day!
As always, sending out so much Love from Me, Martha and Alzheimers xx
“If you resist it, it’ll be cruel to you, if you let it in, it’ll be magic”
P.S – I am hoping to get back into writing again! So keep watching xx