Part One – The Guilt of the Illness
This will depend on the person doing the caring and how well they cope with stress because as a carer for a family member you don’t have the option of closing the door and walking away from the role at the end of the shift. In most cases the only time you destress is when you sleep, but that is not always true as it will depend on the person you are caring for. In my case in the early years of my father’s dementia time was an issue. There would be days where he would wake up during the night and wander, once or twice leaving the flat in his underwear which was not what either of us wanted. As the dementia moved on, there were days of good and bad cognitive awareness which was the biggest issues of our combined life together. With the inevitable ups and downs of the disease hampering the sufferer there will always be a rollercoaster of emotions for the carer to cope with on a daily basis combining a feeling of satisfaction that you are looking after a loved one with the guilt of not being able to cure them or make things better. This is a carers pain.
2. Keeping Busy
Part and parcel of a carers role is finding things to do while the person you take care of relaxes or catnaps or is in bed, So keeping busy is a good way to occupy the mind to prevent a breakdown, but this also comes with a little guilt when you do something that makes you happy knowing the person you look after used to like partaking in the same activities. Dad always liked doing crosswords and sudoku, but his dwindling cognitive ability put a stop to that as it also did with his enjoyment of a quiet drink down the pub. So when I found time to do the things I like to do like read and write poetry or watch a good film undisturbed there was always a twinge of guilt, but if I hadn’t made time to do those enjoyable ventures it would have been a problem for my own sanity. If all you do is care, constantly looking after someone’s hygiene, wellbeing, dietary needs, household chores and don’t take time for yourself, you will burnout and start to hate what you do or hate the person you care for. So don’t feel guilty for taking a little you time.
3. Burst in to Tears
I am a fifty plus man who cared openly for my father taking on a role many deem is a woman’s job, but let me tell you that is a misogynistic outlook on caring. I am not afraid to say it, I am an emotional soul and there were times when I burst in to tears while being the sole individual looking after my father twenty four, seven for a total of seven years. Yes, I did cry when there was no one to witness it, because I was brought up not to show my emotions which was hard for me. The longer I witnessed what dementia was doing to my father the more emotional I felt which professionals would probably call depression, but for me I think it is just a built in trait I inherited from my mother. I always tried to keep composed and happy around dad, channelling most of my emotions in to the poetry I wrote, but there were times the tears got the best of me and still do. My tears seem to be linked to emotional scenes in movies or TV shows especially when they remind me of my parents. So my advice don’t hide your emotional side which I stopped doing with my father and showed him the love I felt with a hug or a kiss to the forehead like any person who doesn’t hideaway from emotion would do.
I am a fifty plus man who cared openly for my father taking on a role many deem is a woman’s job, but let me tell you that is a misogynistic outlook on caring. I am not afraid to say it, I am an emotional soul and there were times when I burst in to tears while being the sole individual looking after my father twenty four, seven for a total of seven years. Yes, I did cry when there was no one to witness it, because I was brought up not to show my emotions which was hard for me. The longer I witnessed what dementia was doing to my father the more emotional I felt which professionals would probably call depression, but for me I think it is just a built in trait I inherited from my mother. I always tried to keep composed and happy around dad, channelling most of my emotions in to the poetry I wrote, but there were times the tears got the best of me and still do. My tears seem to be linked to emotional scenes in movies or TV shows especially when they remind me of my parents. So my advice don’t hide your emotional side which I stopped doing with my father and showed him the love I felt with a hug or a kiss to the forehead like any person who doesn’t hideaway from emotion would do.
4. Feelings of Guilt
So, yes everyone has feelings of guilt. What I found was, as a carer my guilt came and went in waves which depended on the day, hour or minute along with the stages of my father’s dementia. When he was communicating I was fine, but when he was in one of his dormant or not communicable or absent minded phases it was a full onset guilt trip. The guilt stemmed from both the upset of not being able to fix what he was going through and the hidden anger that came with the repetitiveness of dealing with a person whose mind was firing on all cylinders. It doesn’t matter how often you remind yourself it’s not your fault or their fault, those specific feelings will always find a way to catch up with you if you don’t find your release mechanism, thankfully mine was in poetry where I could express how I was feeling. So basically don’t try and hide the guilt, just channel it in to more productive outlets.
So, yes everyone has feelings of guilt. What I found was, as a carer my guilt came and went in waves which depended on the day, hour or minute along with the stages of my father’s dementia. When he was communicating I was fine, but when he was in one of his dormant or not communicable or absent minded phases it was a full onset guilt trip. The guilt stemmed from both the upset of not being able to fix what he was going through and the hidden anger that came with the repetitiveness of dealing with a person whose mind was firing on all cylinders. It doesn’t matter how often you remind yourself it’s not your fault or their fault, those specific feelings will always find a way to catch up with you if you don’t find your release mechanism, thankfully mine was in poetry where I could express how I was feeling. So basically don’t try and hide the guilt, just channel it in to more productive outlets.
5. Fear of Feeling
The fear of feeling is strong! You will always have the love between you and the parent you care for, but there is always those who manage to close of their feelings and turn it in to a list of cold hard facts, for me that was not an option. If anything I feel too much, so what he felt I felt. Some might say they couldn’t be like that, but that is because as humans our biggest emotion is the feelings we have for some one we love and to not show those feeling is hard because we have that inbuilt fear of loss, so we think if we don’t feel, it won’t hurt. My biggest fear of feeling was the fact that I am divorced with no kids of my own and I am an only child born between two generations which meant the generation of cousins I grew up with were all ten or fifteen years older with extended families of there own, so with dad’s death I am now alone. But that never stopped me feeling, it just made the bond stronger up till his death. Now I am just thankful for the time we had together in his latter years, My advice take advantage while you can , for when it is over it is over!
The fear of feeling is strong! You will always have the love between you and the parent you care for, but there is always those who manage to close of their feelings and turn it in to a list of cold hard facts, for me that was not an option. If anything I feel too much, so what he felt I felt. Some might say they couldn’t be like that, but that is because as humans our biggest emotion is the feelings we have for some one we love and to not show those feeling is hard because we have that inbuilt fear of loss, so we think if we don’t feel, it won’t hurt. My biggest fear of feeling was the fact that I am divorced with no kids of my own and I am an only child born between two generations which meant the generation of cousins I grew up with were all ten or fifteen years older with extended families of there own, so with dad’s death I am now alone. But that never stopped me feeling, it just made the bond stronger up till his death. Now I am just thankful for the time we had together in his latter years, My advice take advantage while you can , for when it is over it is over!
6. Churning Stomach
You know that feeling you get in the pit of your stomach when you face the unknown, well increase that fifty fold and that is what my stomach was like on a daily basis. When caring for someone with dementia who you also live with each and every hour of your day is spent with your stomach churning. It is a fact of life that the worry you feel gives you heart stopping stomach churning fits of melancholy whilst you care this is most certainly increased to the point of hysteria some days. Well that is how I felt each morning when I entered dad’s room to wake him. Deep in the pit of my stomach was the realisation that one morning I would find him gone or one afternoon or evening during one of his naps he just wouldn’t wake. My stomach would also flip when he would try and stand on his own in case he fell, it was like watching a movie when you know something bad is about to happen, but have no control to stop it and walking aids were just useless because his coordination was also gone. To me it was having an eighty year old toddler, but never been a parent myself I wouldn’t know if my analogy is correct. Basically what I am trying to convey is that you can try and prevent stomach churning events, yet with all the will in the world you will still have those heart stopping moments while caring for a loved one.
You know that feeling you get in the pit of your stomach when you face the unknown, well increase that fifty fold and that is what my stomach was like on a daily basis. When caring for someone with dementia who you also live with each and every hour of your day is spent with your stomach churning. It is a fact of life that the worry you feel gives you heart stopping stomach churning fits of melancholy whilst you care this is most certainly increased to the point of hysteria some days. Well that is how I felt each morning when I entered dad’s room to wake him. Deep in the pit of my stomach was the realisation that one morning I would find him gone or one afternoon or evening during one of his naps he just wouldn’t wake. My stomach would also flip when he would try and stand on his own in case he fell, it was like watching a movie when you know something bad is about to happen, but have no control to stop it and walking aids were just useless because his coordination was also gone. To me it was having an eighty year old toddler, but never been a parent myself I wouldn’t know if my analogy is correct. Basically what I am trying to convey is that you can try and prevent stomach churning events, yet with all the will in the world you will still have those heart stopping moments while caring for a loved one.
7. Time Stolen Away
There will be the days when life feels like it passing you by, a portion of your existence stolen away. The easiest way to prevent this is to have you time, a time in the day or the week where you forget about caring and do something just for you by getting some external help through family, friends or daycare. The draw back of caring for a loved one is your time is most definitely not your own as you are either at their beck and call or you yourself can’t shut off and are constantly checking they are okay. The problems then come when you start to feel guilty for wanting time to yourself as each day becomes more and more about them, this is when you need to ask yourself if it’s time for care home. For me that was never an issue and I was there till the end when I had that stomach churning realisation that time was up for our combined journey and it was my time to move on alone.
There will be the days when life feels like it passing you by, a portion of your existence stolen away. The easiest way to prevent this is to have you time, a time in the day or the week where you forget about caring and do something just for you by getting some external help through family, friends or daycare. The draw back of caring for a loved one is your time is most definitely not your own as you are either at their beck and call or you yourself can’t shut off and are constantly checking they are okay. The problems then come when you start to feel guilty for wanting time to yourself as each day becomes more and more about them, this is when you need to ask yourself if it’s time for care home. For me that was never an issue and I was there till the end when I had that stomach churning realisation that time was up for our combined journey and it was my time to move on alone.
Part One Conclusion
Next Month’s Note for Caregivers – (Carers Guilt list : Part Two – The Guilt of Bereavement).
