Mother’s needs

My mother lives in Edinburgh with my sister and brother. My husband and I run our Bowness guest house in the Lake District, an approximate 3-hour drive or 2-hour train ride. Thus, my contribution to Mother’s care are necessarily curtailed by what I can do at a distance.

Mother suffers from Alzheimer’s Disease. She was diagnosed more than 10 years ago now, and we have slowly but surely seen the effects of this horrendous disease on our once feisty and intelligent mother. The disease has robbed her of the ability to converse, ‘gifting’ her instead with an imaginary friend, with whom she talks at incessantly on random subjects that no one can understand. Once she was a gallivanter who enjoyed gadding about town and travelling the world; but now she cannot find her way to any of the rooms at home.

Our mother was also a keen reader. The family joke was never to expect Mother to listen to us whenever she had her nose in a book. Now, she cannot read, has lost much of her vocabulary, and cannot translate words into action. Alzheimers is a cruel master indeed. The disease takes away a person’s personality, leaving in its place a curiously inept individual who is nonetheless unable to express his or her own individuality in any meaningful shape or form. That is the tragedy of Alzheimer’s Disease.

I often wonder how Mother, a committed Christian, continues to commune with God during these latter stages of Alzheimer’s. Can she feel the Lord in and around her? Surely the Holy Spirit who lives within her must speak on her behalf. Romans 8:26 reads:

In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.

It is the verse above that gives me comfort on my mother’s behalf. Even if she cannot make herself understood to her fellow human beings, the Lord understands. He knows her and empathises with her in her illness. We do not understand why He allows suffering such as hers, but we are not omniscient, and cannot know His purpose. This sounds really trite, but faith is not faith unless it is all encompassing – a frightening concept for those of us who always wish to be in control.

romans 8:26

Mother’s long trek on the Alzheimer’s road. Christians take heart from this biblical verse, believing in the power of the Holy Spirit. (Photo courtesy of http://wallpaper4god.com/en/background_bible-verse-romans-826-winding-road.)

I fear for Mother as her condition deteriorates. She is still looked after at home, with a number of helpers coming into the house to take care of her needs. Sometimes the carers are good; sometimes they are careless and uncaring. Social Services does not always get it right, and we have had to complain on Mother’s behalf whenever we feel that she has been let down.

I began this post by saying that what I can do for Mother is limited by my residence in a county many miles away. This translates into helping to arrange her care package. When things do not go well, I am usually the one who telephones the relevant agencies to discuss and rectify matters. When she runs out of incontinence pants, I am the one who orders boxes of them for her. What I do is not much.

My sister, who is her main carer, does so much more. She is the one whom Mother will remember for the longest period of time. Mother has already forgotten me and mine. I am unsure whether she knows my brother, with whom she also lives, nor my sister, who can sometimes seem to her the bane of her life. (I know all about the latter because I have heard her yelling at my sister when she tries to get Mum to do things that she does not want to do – such as using the toilet appropriately, for instance.)

I have recently ordered 20 packs of incontinence pants for Mother and this is what has triggered the subject of this post. Mother, of course, has no interest in this. It is only those who live around her and wish her to retain a semblance of civilisation that care about her comfort and cleanliness. As her children, that is our duty and prerogative. If we do not care, then it is unlikely that anyone else will.

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