Most Dementia care advocates/experts, and organisations, seem to agree now that ‘going with the flow’ is a better, kinder way of responding to people with Dementia. For example, when Anthony asks me to find the chainsaw so he can cut wood for the fireplace, I say yes, of course; and when Anthony asked Ming yesterday to move the calves to a different paddock, Ming said yes, of course.
I was really proud of Ming yesterday because when he came home (we’d just missed each other at the nursing home), he said that Anthony mistook him for a nephew and Ming had to say, “It’s me, Dad – Ming, your son.” I guess that’s an example of not going with the flow but Ming did it gently and acknowledged to me that he and his cousin do look alike. I was proud of him for not being upset and for being so gentle in reminding Anthony who he was. I was also proud of him for agreeing to move the imagined calves that Ants often sees in the grassed area outside his window.
Going with the flow in terms of what Anthony says, or tries to say, is easy for me. I am getting better at mind-reading when he is stumped for words, when sentences are impossible. I know him so well, who he was, and who he is now with the Dementia, so I know how to reassure him that his mother and deceased siblings are fine, that the dairy is functioning, that there is plenty of money in the bank, that Ming is growing up fast (Ants often thinks Ming is still an infant).
But going with the flow for me, personally, has recently become extremely difficult and traumatic due to Anthony’s sudden deterioration a couple of weeks ago with the dysphagia and TIAs. My grief was acute because I thought he was about to die. Then, when he didn’t die, my emotions became all mangled and I became consumed with anxiety and uncertainty.
I spoke with my fantastic psychologist this morning about how frustrated and exhausted I was with not knowing when Anthony would die. Of course I already realise that, despite him being in the last stages of everything now, it could still be a long time. She suggested just focussing on each day as it comes, not having any expectations, and re-finding my own identity, the latter of which was something my mother also said to me the other day.
As someone about to facilitate carer support groups, I felt the need to figure some of this stuff out but that’s where the ‘going with the flow’ idea caught me as I fell. There is no figuring it all out; every experience of Dementia, of caring, of loving, of being terrified, is individual and very, very personal.
I have been feeling so weak and distraught lately – even disorientated – but the volunteering jobs have been like a gift! Going with the flow….
jmgoyder 
you have explained it exactly right. even though we know this, it is still sometimes hard when it happens –
“There is no figuring it all out; every experience of Dementia, of caring, of loving, of being terrified, is individual and very, very personal.”
I think this is the key to coping, Julie. Everything is individual and very personal. It IS impossible to predict how things will pan out and in what time frame, so best to ‘just take one day at a time’.
Best to just enjoy your time together and make every moment count.
Vicki
xo
Going with the flow makes sense to me having had to flow with many a flowing people.
I so admire you Julie. It sounds like, from what you are preparing for as a carer support group facilitator, that not having answers and not knowing, is okay too.
go with the flow…a good way to deal with many of the things in life. I can only imagine what you are going through and send (((hugs)))
that’s what I have been taught. I see patients with dementia regularly and what strikes home , is that no two are the same. it can depend on the cause of the dementia. Gentle , little old ladies turn into spitting, biting foul mouthed harridans with Lewy Body dementia and vascular dementia can leave some confused but cheerful. it is so difficult and I have no personal experience with dementia caused by PD.
you are doing a great job Julie so don’t pull yourself down. It is time to develop some interests of your own , then when Ants does go , you will have other things in your life that give your enjoyment. hugs Bx
“There is no figuring it all out; every experience of Dementia, of caring, of loving, of being terrified, is individual and very, very personal.”….THIS and so hard and weird and beautiful and sad and happy and funny and exhausting and I could go on and on.
You are doing such an incredibly loving job…words cannot express the admiration I have for you and Ming. I’m wishing you blessings each and every day. Take a moment to breathe now and again and know that you are still you and you will regain your strength.
These long goodbyes lead to compound grief. I am so glad that you are receiving counselling. Know that you are in my heart and thoughts. Much love
Sounds like you are getting very sensible advice.
I can empathize with you Julie…. It’s true though that you need to keep aware of ‘you’ and your needs as well as Anthony’s… Diane ❤
Hugs to you.
God bless you and Ming and Anthony. Tku sooo much for sharing. ..your words portray what my husband and I are going through … and yet to face. My husband in nursing home with progressing dementia.
Oh yeah going with the flow is the way to go
Sometimes when showering Anthony he would ask if I thought it was time to get those cows out of here. I wondered if he milked cows and thought we might be in the milking shed so I’d say I would just hose the floor down and we’d be right and I’d use the shower to hose the floor.He would say ‘ about time’ then we’d get him dried and dressed and go back up to the house [ into his chair in the bedroom] for breakfast [ morning tea].When my husband was ill he would get very confused and want me to do something so I would say ‘ok’ and he would think about it for a minute and then ask if I thought he was bloody stupid or something, having realized what he’d said wasn’t right so I’d just flippantly reply that I was beginning to think so and then we’d both move on lol.For the last 6-8 mths we took our days a few minutes at a time. Couldn’t think of what might happen tonight or even in an hours time, let alone tomorrow.I still pretty much do that and I used to be a person who always thought long term. Its a better way to live actually.Lot less worry.
This time before death always seems surreal to me. The hype awareness of a universal shift taking place and, at the same time, being held in place by so many needs. The need to wait for death. The need to be there for the life leaving. The need to prepare for the life after. The needs of those grieving. The needs to shut down, to keep going, to mourn …
Going with the flow is the only way to handle it, but it is not easy or pain free. My thoughts and prayers are with you all!
Your mom and psychologist gave you great advice. When your life is in limbo, there’s no one answer that can fix things. You have to take each day as it comes and do your best. But you’ve always done your best. That’s just who you are. Hang in there, and good luck!
Sometimes a person’s abrupt passing seems too much of a shock, but it is in many ways easier than coming to the brink, looking over, and going back–so many times. We are in that place with hubby’s mum.It is not easy.
I so agree. My uncle, my beloved grandma’s son, when she had dementia, tried to tell her the brutal truth…that people or pets she thought were alive were actually gone, and so on. Even then I knew that had to be the wrong way to go about it. Just tell her the cats are FINE, I thought.