Thank you so much for this account. I could almost hear you speaking it. In fact, you ought to record this for people in similar positions to download, I think they would find it immensely helpful, as I did. I'm not terribly tech-savvy and I was wondering if I could print this somehow so that I could re-read it when I'm having a particularly bad day (Mum doesn't have broadband and I'd struggle to read it on my phone. I only get home to my house a few times each week for a few hours (my sanity break) when I can use my laptop.Dear @Arty-girl
A long reply but writing it down helps me to reaffirm what I agreed with myself gradually over the last three years. As mum’s Dementia has developed and my caring role got more demanding, I noticed my underlying frustration was growing, still does on bad days. I realised I needed to make peace with myself, lay down certain boundaries in my mind, accept certain realities, demolish certain preconceived ideas. Build my own tool box of useful items in the emotional battles of the caring role. Honest and open account which might offend some, but might help at least one other person, which would make the exercise worthwhile. So in no particular order.
1) The notion of “living well with Dementia” is a fairy tale. It is mostly told by non carers so they do not have to feel bad about looking the other way. The more you buy into it the more pain you get. Bluntly the role of the carer is to try their best to take the rough edges off the Dementia experience for their loved one, in the process trying not to get to badly emotionally cut up themselves. It is a battle of growing intensity, which the carer is destined to lose. A harsh reality but once accepted a lot of pain and frustration can be let go of. A great deal of frustration is born out of a desire to want to do more for your loved one, protect them. Another part is built on guilt feelings, because we think we should do better in the caring role. I agreed with myself to accept I was going to gradually lose mum, the best I could do was help and support her. Sometimes I would fall short in the caring role, based on inexperience, lack of knowledge, fear of the unknown, etc. That was okay as all human beings have the inalienable right to screw up every so often, just try to stop it becoming a habit. The caring role is primarily a lonely one. Mostly we are the only daily judge of how we are doing. Dial down the self criticism, the birth mother of so much frustration. Always remember you are part of the solution not the problem. Your actions will always be doing more good than anyone else, or if your loved one did not have you.
2) My life was going to have to shrink. Never did get married. Now if the right woman finally turned up at the airport, I would not be there, having got distracted down the rabbit hole of caring. Accept that others would never really “get” the caring role unless they had experienced it to. Accept that my siblings were not originally invisibles, but Covid19 has made them Skype virtual relatives, not flesh and blood real physical ones. Accept that meaningful conversations are a thing of the past. Mum increasingly embraces confabulation, so I must nod, say “is that so, that must have been fun, well I never”, never correct, smile inwardly. The news increasingly seems detached from my reality so after a while I find I have no interest in what Boris has to say, how the economy is doing, who will enter the US Supreme Court, etc. At each point I had to make a decision. Rant about the unfairness, get bent out of shape, bounce off the wall, then come back to facing the same problem but with emotional baggage now as well. Or just accept and move on. I found I did not need as many things as I thought I needed, found parts of me I never knew I had. Found I actually like myself. Those reading this how many have really sat down and honestly reviewed yourself? Try it you might be pleasantly surprised with what you find.
3) I agreed with myself to always try and find a way to relax my mind when I could. I meditate daily, go for an early morning walk when possible, on which I listen for birdsong, recognise leaves are green but if you really look how many different shades and shapes there are. I fell back in love with past passions I had let go. The last movement of Beethoven’s 5th Piano Concerto to lift me, Brahms violin sonatas to smooth troubled thoughts. Reread the Peter Lovesay detective series with Inspector Diamond, a complicated and fun character. Demonstrate to myself what a terrible cook I am in the kitchen. I was hopeless now I am borderline poor. The seagulls in our garden have lived quite well on burnt offerings these last few years, but are now on a some what reduced diet.
4) Allow myself to laugh at the outcomes of Dementia. I am in bed and mum has called out several times already did I hear her turn the light out in the front room (long story)? Yes I have repeated each time. Half an hour later I am asked again. Always that gap before I am asked that one last time. What mental loop does my mum go through that brings her back one last time? Sitting in the car on a windy day in May 2018. A few leaves blown of the trees so mum immediately thinks we are in October, when the leaves fall and stays there for weeks in her mind. Being asked terribly politely one day what my name was. “I know you are my son but I could not remember which one”. Just answer the question, you knew one day it would arrive. I do not say “I am the one you live with, who cares for you, etc“. Instead I laugh inwardly which is better than to cry.
5) Bad emotions need soil and water in the soul as much as good ones. Deny them those and they weaken. If you are getting frustrated walk away, accept telling love lies does not count in the morality stakes, buy yourself a hard pillow to punch it works wonders, give yourself a mental picture that calms you, as usually the human brain can only think of one thing at a time. Remember the golden rule it is okay to screw up at times, we are not angels we are human beings prone to faults. At the end of each day talk to yourself. Identify any bad thoughts or emotions you are holding. Now think of someone you intensely dislike. The person who broke your heart at 15yo in your first do or die love. The teacher who failed to see how gifted you were. The employer who made you redundant. The have a nice day merchant on the telephone line. Whoever you nominate now mentally wrap up your nasty feelings and post them onto that person. Imagine their face when they open their present and out leaps frustration, anger, guilt, etc. Nasty but so rewarding to the soul. Try it. Go on you know you want to.
You might have noticed a vein of humour runs in my internal discussions with myself. Please try it. Remember the old saying better to laugh than cry. I am not trying to be flippant, we all know the beast of Dementia. We all have bad days, frustration starts but we can recognise it and try to divert it. Try and empty the bucket when we can. I hope my words strike a chord with at least a few of you. I owe so much to this forum.