Open Writing

“Why are you walking like that -- shuffling your feet?” We laughed and blamed the shoes he was wearing.

The shuffling became more pronounced as the months went on; also the loss of balance and falling over in the house and in the garden. Something was radically wrong.

After visits to our GP and subsequent investigations including brain scans at Pinderfields Hospital, my dear husband was diagnosed as having pseudobulbar palsy -- a rare condition, the symptoms of which relate to Parkinson’s disease and motor neurone disease.

This could not be possible. This was the kind of thing that happened to other people, not to us!

That was three years ago and now my husband is in a private nursing home where he has been for six months, his condition deteriorating slowly and causing such distress to me and all the family. He will not be coming home again to the little house we bought in which to spend our retirement together.

I looked after Johnny at home for two and a half years, eventually getting help morning and evening to get him out of bed, washed, dressed and fed. But this became too much for me, as I have arthritic hips and back trouble. There were times he would lose his balance, even though I had hold of his arm, and would fall, taking me with him. Although our family doctor had told us that he would most likely end up in a nursing home, I didn’t really believe that. I was convinced that I could cope, but how wrong I was!

Only people who have cared for someone in similar circumstances could know how it really feels. Those who say “I can imagine how you feel” are wrong. They can’t possibly imagine.

When it became apparent that my own health was suffering, I was forced to take the decision to let him be admitted to a nursing home. Now, instead of rushing home from shopping or the dentist, unlocking the door and saying, “Are you all right, love?” I walk the mile to the nursing home, enter the door and say, “I have come to visit my husband.” This sentence is a very emotional one, a sentence that leaves me close to tears every time I say it. To me it is a deep-felt emotion. It is not like a visit to the dentist, or a solicitor, or even someone who is ill and who will soon be better and up and about.

So, after 43 years of marriage, I visit my husband in a nursing home. Every afternoon when that visit is over, I walk the mile back to an empty house, to lead my life in a different world, to watch TV alone, to cook just for myself, to use the telephone, in the house bought for the TWO of us. This is like bereavement without the finality of death. That is still to come. But although Johnny is still in the ‘land of the living’, we are apart and I can scarcely bear it. The guilt I feel will not diminish. I wonder, “Could I have managed for longer?”

I am not happy about my husband being in the care of other people. I do not think I will ever feel his body close to mine again. Even a cuddle is out of the question. He is so feeble and tired. The home that Johnny is in has a good reputation, and the nurses and carers are all wonderful people. I am grateful for all the care he is receiving. But it is not like home.

I have to wash his hair more often than they have time to do, or shave him when it has not been done to my satisfaction. Johnny has been used to feeling clean and fresh, and I can’t bear to see him looking unkempt. I cut his fingernails and toenails and take him little treats, like the occasional fresh cream cake and special things that he likes.

I cannot really accept that things are very different compared to what they were. I feel that Johnny is a prisoner in his own body and only able to do simple things. Being a prisoner is the underlying emotional tragedy of the concept “I am visiting my husband.” What was once a two-way communication of speech and body language is now only one-way -- from me to Johnny.

What comfort can I bring to him? What can I, his wife, say in all honesty? Can I say to him that he is getting better, even if he is not? Do I tell the truth or do I lie and tell him he looks well and is improving because it brings hope, comfort and ease of mind? Such mental torment to my mind!

It makes me unhappy to have to watch one of the carers spoon-feed him, wipe his mouth, put him on a commode, take him off it again help him sit in his chair. Independence of body (even in doing small things) is a God-given gift which a healthy person does not always appreciate. Have we healthy people ever given much thought to buttering a slice of bread? We just do it automatically. But when someone has to do it for you, it is no longer a thoughtless, automatic action. It brings a feeling of helplessness and, perhaps, hopelessness.

We healthy folks can pop into the shower or take a bath, luxuriating in it. If you have to wait for someone else to take you in a wheelchair to the bathroom for a bath, it can be distressing, although you do appreciate that a person has taken the trouble to bath you, albeit only on a Wednesday morning!

Can I still give my dear Johnny the support he needs? So often when I sit with him I cannot stop the tears running down my face. It has been suggested to me by members of staff at the home that I should not stay with him too long -- for my own sake. I do not deny the value of this advice, but seeing one’s life-long partner sitting so helplessly in a chair next to you destroys notions of time. It is only something beyond the face of a clock that really marks time -- bedtime, meals, treatment, my own feeling of tiredness, both physical and emotional.

Would it be selfish to go out with friends for a meal or go for a car run with them, while Johnny cannot do these things? In fact, I do feel selfish about it, although a complete change is needed from time to time, to submerge myself completely in other areas for a while to forget --no, not to forget, but to push the whole problem to the back of my mind. It is a type of medicine to relieve my anguish and pain. Should I feel guilty about enjoying myself while Johnny cannot?

The words that you have read are really the rambling thoughts of a person who at times feels utter despair but, thankfully, is able to come out of the utterness of feeling with the help of a wonderful son and daughter and so many friends and, of course, with the help of myself.

Tomorrow I will be visiting my husband again. I feel happy because I shall be seeing him. Maybe I will be able to do something positive for him, whether physically or simply to improve his state of mind for the day, to see his smile or hear him laugh, as he is still able to do, or wipe away tears and remove anxiety.

But that last wave, that blowing a kiss at the door of his room, that last backward glance at him sitting in his chair looking at me and giving me a feeble wave -- these moments churn me up every day. I am leaving my husband behind -- until tomorrow.