Dementia – A Long Journey
Updated: Jul 1
Since discovering that my mom has Dementia, we have been attending a support group which has been very informative as well as helpful in dealing with the challenges which Dementia throws in the path of both the person afflicted and those caring for them. We learned that under the umbrella of Dementia there are in the region of 280 different sub levels of the disease, among which Alzheimers, Senile Dementia and Vascular Dementia fall. The people we meet are the carers who share their stories. Mom looks forward to the monthly support group and always shares something. When she speaks up, I realise (as does everyone else there) that she is listening and taking in what everyone is saying. So I try to be religious about attending because it feeds her soul.
I’m writing this post because there are some very important things I’ve learned along the way and I’d like to share them with you.
From Monica Wraith – ‘Be Kind’. Those two words have reverberated regularly in my ears since mom was first diagnosed. She knows them too, because I have to keep reminding her to be kind to herself. While it’s easy to understand why I get frustrated with someone who repeats herself and is constantly looking for something she’s misplaced, lost her way or forgotten to pack her pyjama’s when coming for a sleepover… imagine being in her head! Since the day my dad had to go on disability pension, she had to step up to the plate and support a family of five. She’d been a stay at home mom for 17 years, technology had changed in leaps and bounds since she had last worked. Typewriters had morphed into computers controlled by a mouse. Yet she had put herself on a few courses, got herself a job and worked like a demon to ensure there was food on the plate and a roof over our heads. NOW, she can’t remember where she left her hearing aids, where she last wore her glasses or whether she had coffee after breakfast. Being in that head must be the most frustrating place in the world.
Dementia sufferers don’t do what they do to irritate us. They don’t really have much control over their actions and are doing their best to make sense of a time in their life where nothing is sensible at all. They will unpack an entire cupboard looking for a specific T-Shirt, which they gave to charity two weeks previously because it didn’t fit. The problem is not the unpacking and finding out that they no longer have it, it’s what ensues after that causes the issues. People get accused of stealing from them AND then in most instances those very people have to help them repack their cupboard, and usually only after a phone call to the only person they still trust. I often wonder what will happen once mom stops trusting me. Will she think I’m taking things from her? Everything she discards, I label, date and keep in my garage. I never know when she’s going to look for it and want it back.
Next is their accommodation. Remember that this is your loved one. This is the person who either raised you, or it’s your spouse. In rare instances it could be your child if one of the Dementia types is ‘early onset’. We love them and the most important thing is to keep a good relationship with them. Because of all the frustration they suffer in dealing with the loss of mental abilities, Dementia sufferers often take out their frustration on their carers. This can amount to a lot of anger. They will forget the anger and frustration in a heartbeat, but the carer (if it’s someone who has loved them all their life) struggles to let go. This turns the situation into something nasty and difficult to manage. Your best option is to find a facility where staff are trained to deal with the behaviour and have short shifts which give them time to recharge their batteries. That gives you the freedom to do the nice parts, like take your loved one on outings, shopping, for a meal or have them visit you at your home for short enough periods to prevent burn out. The very last thing you or your loved one need is to be forced to live with you (even though they will insist it’s what they want) and completely destroy your happiness to the point where your quality of life has been so damaged that you never recover. YES, it can happen. Remember that Dementia happens to people. It’s not caused by people. People don’t do things to cause Dementia. It’s like Cancer, it just happens to some people. Forcing a spouse to put up with your parent is just as much of a life sentence as doing it yourself. You cannot give your family the best years of your life if you are mentally exhausted from looking after a patient all day. Dementia sufferers require twenty four hour care. They don’t eat unless you prepare them a meal and they wander off without a word, getting themselves lost and in a terrible state. Don’t fool yourself into believing that taking care of them yourself is better for either of you.
Safety First. Remember that as your mind weakens, you forget to do simple things.