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Planning Retirement Online


Relationships - 18

It could be you.... 

Maggi Stamp, LaterLife's Relationship Counsellor

Every month Maggi Stamp, a qualified and experienced relationship counsellor for Relate and in private practice, writes about some of the emotional challenges we meet as we pass our half-way markers.  For reasons of confidentiality Maggi never writes about a particular person's problems unless you have sent one in to be answered, but all her examples are based on problems raised by clients, family and friends over the years.  

You can write to Maggi at maggi@laterlife.com for her to respond in the column.


Dr Alzheimer`s prison

I have recently visited an aged relative and spent a day talking and watching, remembering and laughing, and at times gulping back tears.

She is in her late eighties and has Alzheimer's disease and spends many of her days in some kind of mental space where no-one can reach her. I don’t know what she does there, who she sees, what she thinks or feels, or even if she does think or feel while in that place. 

What I do know is that when I spent a little time talking about who I was and all our family, she began to make connections. With the photo albums on our laps we shared our memories. We talked about everyone, especially the younger members of the family.

One of the many things about that visit which touched me deeply was a gradual opening up of her feeling and the awareness she showed of her own situation. It is three years since she was diagnosed as having the disease and at first she talked openly about it in a typically matter of fact way within the family. She made it easy for us all to talk about it too.

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 .

 


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To view previous articles  - see the Relationship Counselling & Advice Index page  

 



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