My Role as a Caregiver

 

By John F. Tomczak

 

How would you describe your experience?

 

Exhausting, frustrating, demanding, never ending, and in the end the most rewarding time of my life.

 

Exhausting because I had to do a host of things for which I had no training or experience.  Learning to cook and keep house to one’s spouse’s satisfaction is a daunting task. I now have an appreciation of the phrase, “A woman’s work is never done”!

 

I had no time for myself or my hobbies. My rest periods were only when Collette rested. 

 

Frustrating because everything was new to me. Being married to a gourmet cook was no help whatsoever.

 

Demanding because I wasn’t able to organize routines in a natural sequence. I was always playing catch up.

 

Never ending because of the juggling of medication times, visitors and making sure Collette got her rest to say nothing of the endless phone calls.

 

Most rewarding: From the very first, Collette made it abundantly clear she believed that I and I alone could care for her. That of course was her gift to me and it has been a great comfort to me all these past twenty years.

 

Looking after myself.  I did not look after myself and I paid for it. During the two and a half years of Collette’s illness I never once exercised. I put on twenty pounds and eight months later had a dandy heart attack and another one three months later. I was just plain neglectful and frankly I have no excuse.

 

Looking back. I should have taken care of myself. A caregiver that doesn’t runs the real risk of not being a caregiver for very long. I was lucky and I know it.

 

Needed to know. Hard to be clear about this. Home care twenty years ago was not the same as today’s. We have learned a lot. There are more trained people and thank God we have Hospices. Frankly, until I got Victoria Hospice involved I don’t think I had any useful advice from anyone. The operation was very painful for some time. We had drugs for pain but they were not very useful.

 

I got the distinct impression the G.P. was afraid of drugs for serious pain control. Nobody suggested I take care of myself. All of our children were very helpful with visits and such. However Collette wanted me around all the time and that was a problem for the whole family. Looking back I needed lots of advice but until I got Hospice involved I had no one to ask.

Experience. 

 

I am convinced that if ones suspect their loved one is seriously ill they should be involved from day one. If my wife became ill today I would stop at nothing to get advice that I could understand. I have little patience about one spouse’s use of the word privacy. My wife and I understand each other perfectly on this issue.  

 

Learned. It is unwise to hear about a serious illness without asking for a second or even third opinion. The care giver must be privy to Doctors visits and phone calls, copies of specialist’s opinions and should seek information from ones pharmacist. Look to the future. If the illness is serious consider having your local Hospice involved. Hospices have many trained volunteers who can give respite to ease the care givers role. Most of all Hospices are a source of helpful information. 

 

My suggestions: Never, under any circumstance, allow your loved one to be seen by any Doctor alone. I want to be very clear about that.

 

Doctors and nurses do their very best to give clear honest opinions to their clients. The problem is that all too often the ill person hears things very slanted to their expectations rather than the truth of the situation.

 

In our case, because Collette heard information her way and I mine, I resorted to having one of our sons accompany us on visits with Doctors. Get your local hospice involved as soon as possible. It is true that not all doctors take kindly to the hospice concept and if that is so one should change doctors forthwith. Not all of our loved ones can be cared for and die at home, however it is an option and which I hope will be considered by all. It is possible to have the benefit of hospice expertise in pain control in a hospital setting and I hope that also will be considered.

 

Over again: No question and I would be better at it. I have held three people when they died and they were and still are the most rewarding and spiritual experiences of my life.   

 

The Past: It is hard to recreate the past and in my mind serves little purpose. Hindsight is always interesting and God knows anything we have ever done could have been improved upon but we live in the here and now. 

 

Feeling: I did my best, I am proud of that and I know Collette was grateful. 

 

Claire and I have been married for going on seventeen years. Our loved ones are a part of our life and we talk about then often. We are grateful for the past and we live in the present.

 

Every now and then I run into a newcomer in one of our hospice groups who adds just a little more understanding of the word “bereavement”. We were talking about the death of his wife and after a long pause he said. “You know it wouldn’t be so bad if I didn’t love her so much”

 

We shook hands, gave each other a manly hospice hug and I have never seen him again.