 On my visit last month she still knew what the
diagnosis meant and talked slowly, in halting half-sentences, about the difficulty of
trying to make herself understand and, more importantly, be heard and understood. It took
time and concentration for us both. She knew too that her life will soon end. Although she
has no intention of fighting against that, she expressed her sadness and loneliness to me
in such a gentle and accepting way. It
was something I felt hard to take from this once strong, loving, intelligent woman who
devoted her life to her husband, family and friends.
I felt so inadequate as I stroked her hair and
held her translucent hand. I could think of nothing to say. She squeezed my hand and fixed
me with a gaze so penetrating that I felt she was making it possible for me to know and to
express things she couldn’t find the words
for. I was aware of a great anger in myself and a sense of injustice as well as grief.
I
told her how I felt and she nodded. ‘That’s how it is dear, this is my
prison’, she said.
Frustration and incompetence were
what I felt at my own helplessness to do anything to change the situation. It is what
each family member feels as they watch their loved one slowly take their leave while, for
a long time, still living in a body which functions as any other of comparable age.
Since then I have been thinking about the impact
Alzheimer’s has on a family, but here I mainly address the partner of the afflicted
person.
How do you communicate? How do
husbands or wives cope with caring for their partner of many years when this sentence is
handed out?
I see the problems
broken down as follows:
It is likely they
too are experiencing the inevitable physical changes of old age and find their new, caring
role a burden.
They have to adjust
to someone who is both familiar and unfamiliar.
The other person may
have looked after their needs for decades and now has to be looked after.
The other person may
have been someone upon whom they relied or who was seen
as very, strong independent character and now is dependent.
They may find they
have to adapt to being a hands-on carer: living with someone who now has to have their
hair washed for them as they forget to rinse the shampoo off, or to be reminded to take
each sip of their tea, or be helped to bathe and dress.
Any of this can be
draining and exhausting, and there may also be feelings of resentment which is quite
normal in the circumstances but might be difficult to express or even acknowledge.
And then there is the grieving. The partner is also
dealing with the pain of letting go of their
life’s companion, struggling to maintain
the dignity of both and trying to retain respect for their spouse.
They fear the loss and try to do their best,
seeing it as their responsibility to care it is part of the ‘contract’
entered into many years since.
It is likely that
they spend much of their time on household chores these things take much longer as
people get older - and there’s no time to just sit with their partner and encourage
them to talk, remember and express themselves.
The more determined
they are, the harder it is to acknowledge the point at which it becomes too much, that now
there is a different need which will be better met by someone else, usually a professional
carer.
There is a danger that a partner could see this as
a defeat, that they should have done more, could have done better. But now comes the chance to give up the practical
caring and concentrate on the remembering and communicating.
If a spouse goes into care, or they both enter sheltered accommodation, someone else will
take care of the practicalities, opening up the opportunity for the couple to spend their
remaining time together in gentler ways: helping by talking, reminding and above all,
listening, giving their loved one a chance to find a way to their remaining memories.
It sounds simple but it is vital, and a way - for a time a least - to accompany their
partner out of the prison and into the open.
The
Alzheimer’s Society has a comprehensive website and suggests the following books:
website. http://www.alzheimers.org.uk/Facts_about_dementia/factsheets.htm
Dementia, Alzheimer's and Other Dementias: the 'at
your fingertips' guide 2nd edition by Cayton,
Graham and Warner, published by Class Publishing, price £17.99.
Comprehensive, medically accurate
information on Alzheimer's disease and other forms of dementia, in an easy to understand
format. Covers everything from diagnosis and treatment to the practical, day to day
problems, getting help; residential and nursing homes; legal and financial advice. ISBN: 1859590756
Caring for the Person with Dementia: a handbook for
families and other carers by Unwin, Lay and Woods, published by Alzheimer's Society, price £6.50.
A
practical guide for carers of people: understanding the person with dementia; practical
caring tips; getting support; useful resources. ISBN:
1872874665
The Alzheimer's Society book of Activities by
Sally Knocker, published by Alzheimer's Society, price: £24.99
A
practical guide to activities for participation with people with dementia. Describes a
variety of different activities including music, arts, food, massage, things to do at
home, community outings, gardening. ISBN: 187287472X
We hope
you find the column useful and interesting … and
if you have any comments or suggestions, Maggi would like to hear from you. Either share some your own experiences in the
laterlife forum or email her on maggi@laterlife.com .
To view previous editions of Maggi`s column see below:
1. - Retirement, a hidden sting?
2. - Boundaries of being a grandparent
3. - Still strangers after all these years
4. - First steps to a new beginning
5. - Holidays can spell trouble
6. - A new start after divorce
7. - Sarah leaves home
8. - Sex in a long-term relationship
9. - What about the children
10. - So good when they go
11. - We are never ready for this
12. - Time for a Spring-clean
13. - I don`t like granny
14. - Black sheep or just different?
15. - Is it our age or is our marriage on the rocks?
16. - We can`t get on with our daughter-in-law
17. - My brother is very ill; how far should we
interfere?
If you would like
to contact Maggi at her Consultancy you can phone her on 0207 7337890.
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To view previous articles - see the laterlife-interest index page
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