Receiving appropriate care

Since Mum developed Alzheimer’s, my sister and I have been at pains to find her the appropriate care she requires on a daily basis. When Mum was still quite able in the early stages of the disease, she could be left on her own to fend for herself in the daytime while my sister and brother, with whom she lives, were at work. Gradually, over the years, her mind has deteriorated. More recently, particularly over the last 3 years, the pace of her mental decline has increased, and we are now left in the challenging position of trying to find the best solutions for her current needs.

I have spent part of this evening speaking with Sis about Mum’s care needs which was the catalyst for this post. Up to 6 months ago, Mum had been attending an Alzheimer’s patients club under the auspices of social care. Unfortunately, Mum developed an imaginary friend and began to speak to this ‘friend’ instead of interacting with other club members, resulting in the club manager complaining about Mum’s unsociable behaviour, which she said had also upset certain members. When pushed, we found out that whilst there were other unsociable members in the club, they tended to be unsociable quietly, rather than volubly, if not loudly, ‘conversing’ with an imaginary someone.

The club manager’s response was to complain frequently to my sister about Mum’s inability to interact meaningfully with other club members. Moreover, she told Sis that she had had to take Mum out of the group and sit her in her own office (like a naughty child – my comment) whilst she completed her paperwork, thereby imposing on her time and space. She admitted that it would take too much time and effort for her and her staff to draw Mum out of herself and to help her integrate with the other club members. This, she made clear to Sis, was not tenable and she wanted Sis to take Mum away – never to return.

As a result of such so-called social care through a club supposedly specialising in Alzheimer’s sufferers, Mum’s ever decreasing social circle has diminished even further, resulting now in one to one carer interaction at home. My fear, of course, is the lack of stimulation for Mum, which I have always understood to be of immense importance in enabling an Alzheimer’s patient to retain what brain power he or she has for as long as possible. Thus I started to make my rounds of calls to social care centres and agencies again.

One of these calls resulted in a potential placement at a new day centre club specialising in care for patients suffering from moderate to severe Alzheimer’s Disease. Mum has just met the manager of the centre and is now on the waiting list. I am so pleased that Mum has had a positive assessment for attending this club, and do hope that a place will come up for her soon. The centre is not located near Mum’s house, but it will be well worth the return taxi fare and club fees if she enjoys it.

Alzheimer’s Disease is such a cruel disease, as so many ailments are. It is a pitiless disease whereby one loses all sense of identity and social awareness, making a mockery of life within the human social context. For carers of relatives or friends with Alzheimer’s Disease, it is a painful journey indeed to witness not only the mental and physical changes which make their appearance in their loved ones’ lives, but also the myriad social implications and impediments which accompany them.

Unfortunately social care does not always keep up with the changing needs of Alzheimer’s patients, leaving many to flail and flounder by the wayside. My mother has been a victim of just such a system, but whilst she has remained voiceless, being unable to address these issues herself, her children have been more vociferous in trying to arrange appropriate care for her needs. However, this begs a rather frightening question: who will champion an Alzheimer’s victim’s cause if that person has no one to speak out for him or her?

I would like to end this post with An Imaginary Letter From A Dementia Sufferer to A Care Giver:

My very dear Care Giver,

When you read this, please try not to consider me an ungrateful wretch. I am truly grateful for all that you do for me but I would like to try to explain how I often feel. This illness is a robber. It is robbing me of all that made me the person I am and I am so afraid that I will come to be looked on as an ‘it’ , a ‘sufferer’ rather than ‘me’. I am still here. Often I cannot express myself and it may seem like I no longer care but if you only knew how much I do care. . . .

I am so frightened when everything, including my mind seems to be slipping away. You are my only anchor and I need you to try to understand how important it is to me to still be treated as the person you used to know, and hopefully still love. Demonstrations of affection mean so much to me. Hug me sometimes, please?

I know how trying it must be for you. Should we have a little shed filled with old china so that you can go there sometimes and have a ‘smash up’ to make you feel less frustrated?!

I may as well admit too that I am apprehensive of death which is surely drawing nearer. Besides the suffering, it is fear of the unknown, of a change of world. Teilhard De Chardin, whom I used to find so encouraging said that there must be terror and bewilderment when one has to pass from one to another but if one can surrender oneself totally to God it makes us enter into Him. It becomes an active reality. One more phase in a world and a ‘becoming’ that are those of our own experience.

It would help if you would sometimes read a Psalm with me.

This is not meant to sound morbid or melancholy. It is just an attempt to explain some of the things which frighten me and in which your patience and your love are such a strength to me.

Underneath all this I am still the old familiar me with many frailties but with a sense of humour and a deep care for others.

Please take my hand as we journey on together.

(Quote courtesy of http://onlineministries.creighton.edu/CollaborativeMinistry/Alzheimers/alzheimers-sharing.html.)

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