He’s biting his lip, blinking and looking upwards, then he looks at me with tears in his eyes. “She knew my face, but didn’t know who I was, just kept staring at me, I showed her pictures from my phone, of our son, our dog, then she smiled, grinned, pointed like a child, dog she said, dog. I have a dog, then like a switch she was blank again. What the f**k am I supposed to do, where’s my wife gone, how can I make this better?”
This was a conversation I had the other day with a friend, who’s wife all of a sudden has disappeared into her own world, who’s in hospital getting test upon test to diagnose what’s going on. The husband is lost, angry, frustrated, clinging at straws, needing to talk, not wanting to be a burden, afraid for his son, himself, his wife, the future…….. I cried with him,there but for the grace of God go I. I could only listen,that’s what he needed.
All over the country there are families dealing with loved ones in the varying stages of dementia. All confused by the medical world and the tests/ answers they are propelled into. Routine affected/dictated by GP and hospital appointments. Googling information, trying to understand. Maybe disregarding what they see, not wanting to admit their partner has changed, IS changing. Other family members noticing, trying to broach the subject. Watching your loved one change before your eyes, to become a former shadow of themselves is heart wrenching, like a death.
There are so many emotions to plough through, some feel guilty that they can’t cope, feel angry at the new role they’ve been put into ” in sickness and in health”, to know when the better option is to entrust your loved one to an establishment of care.
Where to start, the horror stories you’ve read, how do you choose, how do you pay. All unexpected trials the healthy family have to endure. The stress and worry alone to go through this journey, never mind that your best friend and life partner no longer acts like the person you married.
Your dad or mom no longer holds the position of patriarch/matriarch, but has become like an overgrown toddler, challenging, demanding, with no sense of safety or responsibility yet still expecting to be in charge. Still no realisation themselves that they need help. Dealing with someone who’s paranoid, accusing you of all sorts, using language you didn’t know existed. “She was so quiet and gentle, always helping others, I’ve no idea who this foulmouthed aggressive woman is?” Dealing with someone where you remember all about them, but they mistake you the grandson, as their husband or the neighbour or worse they don’t even remember you, let alone your name. “What’s the point of visiting, they don’t even know me anymore”. The feelings of guilt when day after day, week after week, month after month, nothing changes and you get steadily more frustrated and angry and lose patience, then cry with guilt because “it’s not their fault, I’m just so tired of this”. The realisation, that even tho you’ve lost the person to their illness, that that illness is slowly destroying them and at some stage you’ll lose them all over again, but to death.
The guilt that you wish it was over……
All the same stages of grief……..
Support is key. Whilst the patient goes through the system, gets allocated the treatment regime and the care package relevant to the stage of dementia (and remember this can be a long and laborious procedure). The family are left to carry on, be practical, not just to do with their loved one, but with every other aspect of their lives. Work, family, themselves. Usually the partner is also ageing, maybe has their own health problems to deal with. Without a partner to lean on they have to rely on others, not in our natural independent instinct to do. Now the rest of the family have to adjust to their new roles as the inner-structure of the family pyramid shifts.
A recent scenario was one daughter felt so guilty about her mum being in a home, she left her job, took her mum out of the unit and now provides 24hr care herself. She is coping, just. She has no social life, at times she and her mum fight the bit out, it IS 24hr care and of that, she’s getting very tired. Time will tell whether it was the right decision, but with such a waiting list she’s not guaranteed getting back into the unit that was her first choice.
Another scenario, a granny flat, made to keep her close and safe, yet give her some independence. I watch as the ‘granny’ walks down our cul-de-sac in her mismatched outfit, heading to “the shops”. She goes to the end of the road, turns back, heads home, turns back half way, back to the shops, turns back, never quite makes her journey, the grownup daughter watching from her window. Should she intercept? should she leave her be?
” I knew something was wrong when she came down the stairs, she was wearing the arms of the cardigan on her legs, quite proud of her ensemble, I didn’t know whether to laugh or cry, I did both”
“She kept shouting at me to tell her where the baby was. Our sons fully grown, she didn’t even remember the other two, no matter what I said or how much I tried to reassure her, she was beyond listening”
“Daddy it’s me, look at the photo, do you remember that day?”. Nothing. Blankness……
“Where’s my husband? He’s dead? What? When? Oh no? What am I going to do now.” This was from a widow who’s husband had died when she was well, she’s forgotten, when she asks and is told the truth, she grieves like the very first time. We spare her that, the family have learnt that sometimes the truth, the whole truth and nothing but the truth, needs to be handled with care. That their response could provoke very unexpected reactions from their loved ones.
It’s a learning curve as you have to recognise nonverbal cues, always on your toes regarding their actions and the possible consequences, when to let them be independent, when to intercept, how to deal with the moods, the confusion, the paranoia, the temper. The silence, the blankness, the silent tears that trickle down there faces, the joyful times of recognition, a conversation, a look, a connection. A roller-coaster journey for all involved.
I think of the movie Up where the old man has lost his wife, his best friend to death. How much worse is Limbo where you have to lose them twice. That is the biggest sense of loss, that those who remember what they were like before, have to continue with the journey, whilst watching their loved ones fade from view.
Support, again I say it, from family, friends, those who are going through it and from those have gone through it. Being able to talk about feelings without feeling as if they are time wasting, or that what they are feeling is wrong. Recognising that it is as equally hard for the family as it is for the patient. The alzheimers society have regular meetings/support groups/ online information for the family’s. Counselling can also help. Also having time out away from the situation, time for yourself, time to think,reflect, to gather yourself up again and face the next challenge.
Soapgirl
Support Groups
alzheimers.org.uk/
ask.com
nhsinform.co.uk
OurAlzheimers.com
www.healthtree.com/articles/dementia/support
dementiacentre.com/
