This morning I read an advice sheet from a local dementia support organization on “aggressive behaviour”. Enough to send me into a rage, never mind behave “aggressively”. In another article on Facebook, someone says “Remember, he is no longer your husband, the disease took him away”.
I also read stories of how dif cult it is for Caregivers to cope with a spouse who does not sleep at night and how they are at the end of their tether. The varied manifestations of dementia cannot be underestimated, and are not easy to navigate. We are not all equipped to be caring, patient Caregivers. Life brings so many stresses without having to care for someone who needs full-time support.
There is no guidebook or recipe. If you have met one person living with dementia, you have met ONE person living with dementia. The same goes for every Caregiver – we are all different, we have different abilities and different needs. We are not all emotionally strong individuals. Navigating through the myths and the lack of proper guidance becomes a nightmare for most Caregivers. Life is hard, and the struggle is real.
One thing is for sure – you cannot go at this alone. So many people, especially spouses, think that they must do this on their own. There is often shame about a spouse’s behaviour or the fear that they might behave in a way that could be embarrassing. Sometimes spouses simply do not have the energy to face the world out there and would stay at home instead. It is also a reality that many friends would disappear when a person living with dementia starts showing signs of behaviour that are considered not “normal”. The loneliness of a spouse of someone living with dementia cannot be over-emphasised.
Sadly, our world is moving further and further away from being a civil society, a place where we are neighbours who care and reach out and support. So many of us are barely getting enough time for ourselves, let alone reaching out to those of our friends who are in need.
I believe in friendships. Not the Facebook type, but true, authentic friendships that have taken a long-term investment approach. The friend with whom you can open your heart, the friend who is there regardless, the friend who makes it their business to get to know you. The friend who can say “I do not agree with you”. Who can point out your good and your bad? These friendships are long-term investments that take a lot of time and effort, through good and bad. I often think that with relationships (of the marriage kind) there is never a given that they would last forever. A solid friendship does if it has been nurtured long enough.
This not only goes for reaching out to a Caregiver when a spouse or family member has been diagnosed with dementia. It is equally true for the person being diagnosed. How many of your friends would be there for you if you can no longer be the funny entertainer, food lover and good host? Will there be friends who will be willing to take you out and not mind your drooling when you are not able to eat with a knife and fork? Will there be friends who will say to your spouse “Go away for a weekend, we will take care of him”? And change your soiled incontinence wear?
What is your investment in the long term, should you one day be diagnosed with dementia? What are you investing to make sure that you have a good heart, that people still want to be with you, and that they will plough back considering how much you enriched their lives? In fact, I wonder about the prevalence of dementia amongst people who have nurtured very close, intimate relationships with others throughout their lives…would they be less vulnerable to the detachment of dementia? (I have no idea if this has been researched, but it does make me think.)
Don’t wait for the bad news. Begin your long-term investment in your own connectedness today. Engage. Be mindful. Get involved. Allow yourself to be there fully for someone else. Be there. I somehow think it will stand you in good stead on many levels as you grow older.