Hello
i have read through this thread and would like to offer a few heart felt observations which may help others. I stress they are based on being a sole carer, with no partner to talk to daily, isolated with my dear mum who is not as she was bless her. As others have stated caring for a loved one with Dementia is physically and emotionally demanding, isolating, stressful, unpredictable, etc. In short an internal emotional washing machine, set on unpredictable cycles. We all know the problem so enough said there. So how do we deal with the outside world.
1) Always realise your best friend is yourself. Easier said than done. I always check in for an internal chat upon waking and when I go to bed. During the day when I feel anxiety or frustration developing. Give yourself some praise, pat on the back, acknowledge any new skill or information you pick up as you move through the day, etc. ALWAYS ALWAYS remember you are part of the solution not the problem, no matter what is said by unknowing others. None of this is the first sign on mental degeneration, just you being your own best friend. Costs nothing and I find really helps.
2) Now let’s consider the real professional know alls. Be selective in your use of “advice, knowledge or wisdom” given to you by others, well meaning or not. Would you accept guidance from a tapping window blind, from a drunk, from a child aged 3 years, from a person with no knowledge of the problem you are confronting in any field, let alone Dementia. When you are next given some utterly useless advice from a know all, do not bite your tongue, etc. Just smile and say thank because internally you will be chuckling. You are so far off beam matey, think you know it all based on a conversation down the pub, or what your pompous over inflated opinion of yourself tells you what you would do. It is laughable how out of touch you are. Smile outwardly but really chuckle internally. I will dine on this idiot for days in my mind, in moments when things get tough. Better than even Billy Connelly.
3) Now let’s consider the “well meaning” people. When they ask how your loved one is always answer “yes WE are doing well, thank you for asking”. It will only get worse. “Thank you. As a rule I take one day at a time, deal with the problems of today, prepare as best I can for what is to come. None of us can be sure what is in our own futures.“ I tend to find that last point wipes away any smugness, introduces a better sense of equality in the conversation. You might lose a few “friends”, but put bluntly what were they positively bringing to the party. They know the problems you face in general terms. If there is no offer to help at any level all they were was an echo chamber of your worse fears and nothing more. Better one real friend and helper than an army of “I saw you, could not avoid you, so I am now trying on my neighbourly act, whereby I am in control of this conversation, I have only passing interest in”. If you think me harsh just ask what are they really doing? Truely out to help you and your loved one or..........
In summary from day to day sole carers for loved ones with Dementia are isolated, lonely, not in great shape emotionally and some physically. We have a limited budget of strength, maintained by an often overworked dynamo. In those circumstances why waste precious resources on people who through smugness, lack of understanding or knowledge, etc, just bring you down or make you feel invisible. Laugh internally, answer directly when asked a question, save your energy for better uses. That advice could also help carers with better family or partner support mechanisms, they to have those darker moments, those internally scream moments.
As I say just a few best meaning thoughts to ponder. Wishing you all well. Now I am off down the pub to get myself topped up with well meaning advice on building my own nuclear reactor in the back garden. There again.......