Carer’s Guilt — Part Two
1. Introvert v. Extrovert
Becoming a carer for a loved one can be a lonely undertaken, but for an introvert it could be worse than an extrovert because like myself, introverts don’t have many friends which closes them off to the outside world. The way this effects a person can also effect the way they perform the role, so finding a distraction or a hobby is a way of staving off any hidden depression that may be developing under the surface. The extrovert who cares for a loved one has the advantage over the introvert because they already have a support network outside the home and may well have people who can relieve them for a couple of hours daily. But whether you are an introvert or extrovert, being a carer will have a lasting effect on you, how much it effects you will depend on your strength of character and what type of release mechanism you find to alleviate the stress caring can put a person under.
2. Starkness of Reality
The role of a carer is a reality that can become stark and bleak very fast if the individual doing the caring is not prepared for what Dementia or Alzheimer’s can do to a loved one. As the disease advances through its different stages towards the end of a persons existence they can become starved of reality because the mind fluctuates in to the past bringing a starkness to the daily reality they perceive as their life becomes a revolving door of lost time and memories creating uncertainty and anxiety within their day which will upset the balance of sanity, but don’t contradict them as the ailing mind is very fragile and could cause a deeper depressive state or antagonise creating an angry outburst. Being the carer you can also experience a starkness of reality in your own life as the role becomes longer and harder, so you have to be ready to play a bit of a martyr and role play depending on the particular reality they are living on that day or hour, but also hold on to the possibility that you will feel a little starkness in your life when dealing with the role of carer. Just be honest with yourself because if the hardship takes its toll then how you perform that role will be affected, in turn effecting the person you care for.
3. Sense of Emptiness
Long before the inevitable death of your loved one, you may have a sense of emptiness as they slip away from your reality in to a world of their own. I cared for my father for seven years and witnessed his withdrawal from life on a daily basis which gave me a sense of emptiness and a stark truth of how life would finally be without him. You can’t imagine the hurt you will feel as your conversations turn from parent and child to that of a third party who is their to care for them. There are days when the pangs of guilt you feel are like a vacuum engulfing your very space because you find yourself filled with pity thinking more of how their ailment is effecting you rather than how they are feeling. Don’t get down heartened if that is you some days it is only expected as you give of yourself fully in mind, body and spirit to the wellbeing of your loved one. These are the times when turning to a close family member, friend or even your religion can stave of the pains of sadness and help restore your equilibrium to carry on.
4. Overwhelming Sadness
As with the last topic the burdens of caring can play apart in the overwhelming sadness you will feel as well. My sadness came from watching the once strong man who picked me up as a child and showed me how to forge ahead in life turn in to an immobile mute who couldn’t care for his own hygiene, that is what really brought on the sadness. Sitting in the same room with him watching him sit in the same position for hours on end unless I helped him to move, not able to stand as his body gave in one muscle at a time. The worst sadness came at the end when all I could do was watch him slip away from me in to endless hours of sleep, with the odd occasional look of hurt in his eyes that was like a dagger to the heart each and every time. The final two weeks of his life were the worst as I spent hour after hour at his hospital bedside only leaving to eat, shower and sleep. The sleep was the hardest because I had been told by the doctors there was nothing they could do for him, but make him comfortable, so every time I closed my eyes I was waiting for the call to tell me he was gone or to get to the hospital quick so I could say goodbye. This is what I found to be an overwhelming sadness that over shadowed our final days together. In the end as much as I wanted him to live, there was this underlying guilt felt as I wished for his time to be done and pass on peacefully rather than the pain he must surely have been in.
5. A Finally Never Wanted
With nothing left for the doctors to do, I was asked if I would like to take him home, so he could pass on in his own bed within his own home, which I did. I have to tell you I am not sure which is better a quick death or a slow death as they both hurt the one’s left behind. I have experienced both. With dad it was a long seven years of heart wrenching anguish where I got to say goodbye to him whereas with my mother I spoke to her before I went to work. Then I received a phone call from dad while I was at work telling me she was been rushed to hospital and by the time I got to the hospital she was gone, so I never got to say a proper goodbye. I wouldn’t wish either scenario on anyone. How dad passed was a long drawn out two weeks which ended on a Sunday morning in June. The previous Tuesday I had been told I could take him home, but due to firstly, the carers needing to organised for a specific start time, then an issue with the ambulance booking he did get home till Friday. I got him settled and every thing seemed great except his GP neglected to do the required home visit so there was no official hand over of paperwork and he would not be seen till the following Monday. Saturday seemed to be going well then he started to struggle breathing as he wasn’t able to swallow properly and he sounded like he was drowning, so I called in the palliative care nurses who came in just before seven pm that night and gave him an injection to ease his breathing, but I still hovered all too frequent to make sure nothing was happening. At about one in the morning I finally decided to try and get some sleep because the caring team was due in at seven to wash and change him. I woke to the alarm going off at six on that dire Sunday morning, got dressed and checked on him before going to the toilet. That was it, when I returned he was gone just like that. After seven years of full time caregiving it was over in a single breath. It was a finally never wanted, now I no the true meaning of loneliness.
So what is bereavement? Well for me it wasn’t how every one tells you it is. I don’t think I have ever openly shown bereavement and have always shown a hard exterior to any family over the years. I believe it comes from a need to be in control always. I never knew my grandparents, so I never experienced close familial loss until my mother died and I was in shock over how quick it happened, but instead of processing the death I went straight in to taking control of the funeral arrangement to give my father the time to process the loss of his wife of 47 years. There was odd occasions when I felt the grief, but I shut it away and instead concentrated on work and caring for my father. Then came my fathers death sixteen years later and on this occasion there was no bereavement as such, because over the previous seven years I had done my grieving as I watched him deteriorate, so in the end it was more like a relief which in itself was pure guilt, for his suffering had gone and he was now at peace. Then came all the death related duties which took up my time. I can say there are days when bereavement gets the better of me, while watching a sad scene in a film or listening to a particular song and the tears flow for no known reason. So bereavement to me is a lasting entity which even after sixteen years for my mother or the year and half for my father creeps up on me, how you deal with it is a different personal journey for everyone.
7. Moving on
Again like bereavement, how we move on after losing a loved is a personal thing. Some people wake up and just get on with life, while others linger in the loss for a long time. For me I have always been a bit of a loner, so other than searching for work, you could say I have just meandered along at my own pace. Some people don’t have the luxury of moving on without been tied to the past because close family are involved in the equation, again for me that isn’t in the mix because now there is only me with no spouse, kids, brothers or sisters to worry about upsetting. I move on, I grieve, I look back to the past and mourn the family I no longer have, but at the end of the day life is life and death is death. You can do something about the first as the latter comes to us all in the end. For me life moves on, but I still remember what I have lost. Two loving parents who were dealt a hand that was ever changing as life is never a constant, so I will move on alone writing my thoughts down in poems and on my blog.
Part Two Conclusion
So the illness is over and the bereavement starts, but how you cope with the guilt, the sorrow, the loss is predominantly your personal journey. If you have someone close to share it with all the better and just remember the heart may break, but it will heal with time. Grieve in your own time frame, there is no set period for loss to no longer hurt. Believe me when I tell you I still feel the loss of my mother and she has been gone for sixteen years, my father too, but that is still a fresh loss and I keep them close in pictures and memories because they were and are still a part of my life even if it the past. Memorialise your loved ones in your own personal way. The pictures and the memories I use to fill in the emptiness I feel on a daily basis. My thoughts are with anyone who is or has gone through the turmoil of watching a loved one suffer with dementia or Alzheimer’s, I know it is a heart wrenching thing to watch, so keep safe and if you are still caring enjoy the time you have left, savour every moment with love.