No one and nothing can prepare you for the role of becoming a caregiver to a loved one. It happens very gradually as they begin to become a little more needy and you just naturally help to make them more comfortable in their lives.
As the disease advances, you continue to be there for them in increasing amounts of time and physical ability.
My husband, 84 years old, was always a very vital man. All his life he was strong, athletic, intelligent, capable of whatever life presented. Slowly, that began to change, but not noticeably so, in the beginning. Looking back, I remembered unexplainable behaviours which were not at all characteristic of the person I had known and loved over many years.
The diagnosis made sense to our family.
Memory lapses, short anger outbursts, losing the ability to process events has caused him to forget all friends he knew before. Loss of interest in the world around him, whether that was politics, sports, family conversations, were all red flags which I did not recognize at the time. Constant repetition of questions tests my patience at times although I strive to remain as calm as possible. Short attention spans have proven these truths.
This has made conversations between us very difficult as he keeps forgetting what we were discussing. I miss those conversations very much. This exacerbates long periods of silence and for me, loneliness.
I must be in his line of sight at all times adding extra stress for me as it limits my activities. I cannot leave him alone and have had to curtail any outside interests.
Also, when we do have a disagreement within a very short time he has forgotten all about it.
There’s no point in remaining upset. More loneliness. Another event which has prevented us having any discourse is that his speech is now most difficult to understand, even for me.
When he attempts to tell me something and he cannot find the words, he becomes very frustrated. No wonder. As a result, when we find ourselves in a group, he listens carefully but can seldom contribute to the exchange. The smile on his face shows that he is enjoying the crowd.
Unless someone has been on this journey of caregiving it is impossible to understand the exhaustion which is prevalent at all times. In my opinion, looking after a husband 24/7 is impossible without definite periods of respite. Whether it comes in the form of chatting with friends or enrolling the person in the Day Program at the Alzheimer Society, this gives me time to recharge.
At this time, I am fortunate that my husband is calm and positive. No signs of aggression as yet. I know very well that this can change quickly. He has not said my name in months and I realise that he does not know it any longer. That is most difficult to accept. When he does attempt to say my name, often he will pronounce one of his five sisters’ names instead. More loneliness yet.
Recently, I have come to understand that while he knows that I am important in his life he cannot comprehend why that is so.
He is very affectionate and smiles very often. Wonderful moments still happen and I treasure every one. He loves to dance so whenever there is music he dances whether with me or by himself. Those are joyous occasions.
Every so often he exhibits “moments of clarity” and tells me that he appreciates what I am doing for him.
He also tells me often that he loves me and I never tire of hearing that. When that happens, I see the man he used to be before this horrible disease took its toll. Yes, he still has good days but those are becoming more scarce.
Nights are becoming more difficult as his sleep patterns are erratic now and I need to be up whenever he is. If it should happen (almost never) that I don’t wake up, he squeezes my foot or my arm to awaken me. He needs my attention, always, whether it is day or night. Exhaustion hardly describes what I feel most of the time. I, too, am 84 years old.
So, here we are right now. Am I leaving? No! On one occasion in the early years of this journey he asked me, “When I don’t know you any more what will you do?” I will be by your side was my answer.
One positive aspect that has emerged from this long struggle is that I have learned that I am stronger than I realized I could be.
Erna de Burger-Fex was a longtime columnist for Northern Life, Sudbury.com’s predecessor print publication, for many years.