We never saw it coming!
We never thought it would impact our lives! We had no idea how to deal with what was about to come!
In October 2008, when Craig’s father suddenly passed away, it left his mom, lost and alone, in the only home she ever knew as an adult woman, five hours away from her only son. While she still had friends and extended family nearby, it wasn’t the same. The smallest daily tasks had become a burden, grocery shopping, doctors appointments, and the like and taking care of the house and property an impossibility.
It wasn’t long before her own health began to fail as dementia silently creeped in, slowly taking away her ability to live on her own. For those familiar with dementia, emotionally it represents “tired of living, afraid to die”. This perfectly explained Josephine’s perception of life here on earth. Life was no longer what she knew, her independence had been stripped away and went quickly down hill after losing her license and the ability to come and go as she pleased. Shortly after, we decided it was time to move her out east, near us and her grandchildren to give her as much quality of life as possible and help in any way we could.
While we are so grateful for all of the time that we have with her and the joyous memories that have been created, we were not nearly prepared for the impact it would have in our own lives.
Understand it is not the time that we give or the errands we run that make it so hard. It is the emotional strain felt by all that know and love her. This is the impact we could not be prepared for.
Some days are great, she is the Josie we’ve always known, other days are so unpredictable. From anger and screaming to crying in the corner where nothing will soothe the emotional pain she is dealing with. Dementia leaves it patients, so confused that they have no logical reasoning of life’s daily activities, yet aware enough to know that they are confused. This often leaves them feeling an internal frustration, anger and sadness that is hard to explain. They literally feel the life being sucked out of them.
So what can be done?
There are several things that we have found to be extremely useful to help her and ourselves.
First of all, you must realize that their anger, frustration and sadness is not directed at you personally which it may feel it is. You are not making the patient feel this way and you can not fix it for them. What you can do is to have empathy for them and remain calm and understanding while they express their emotions. During these emotional outbursts, trying to rationalize or defend yourself will only escalate the situation.
A Lost Child
Imagine for a moment that you have a young child around the age of three or four years old. You place your child in a new daycare that you know is a safe environment for them and head there to drop them off for the first day. Nothing has been explained to the child about where you are taking them, what will happen there or how long it will be before you come back to get them. You just simply drop them off and leave, saying “I will be back to get you at some point”.
Feel into how scared this child would be, how uncertain and the feelings of abandonment they may experience. This is the reality of life for the dementia patient. Josie has no idea where she is in her apartment, what is going to happen to her while she is there and no recollection of when the last time we visited was or when we will be back to see her again. She doesn’t understand it is her home and that she is safe. This reality can cause them anxiety and extreme sadness. Remain calm, LISTEN, offer love and support and most of all, reassure them that they are safe.
Flow not expectations
Secondly, approach each visit with the intention of doing what is fun for the patient and be prepared that you never know what their mood might be. Set aside all expectations of what the visit will be and just go with the flow. Prepare your mind that this is the time you have set aside for their benefit so have zero expectations of what it will look like and what you will accomplish.
Your only goal in that time frame is to leave them better off than you found them when you arrived. We find that Josie still really enjoys going out, taking a drive, looking at all the trees, corn fields, houses and cars, and stopping out for something to eat. She also enjoys coming to our home. While this isn’t true for all dementia patients, she is actually less confused when she comes and spends several days at our home. The different, uplifting environment diminishes her symptoms.
Listen and Acknowledge
Third, listen and acknowledge the hallucinations as truth vs trying to convince the patient otherwise of reality. To them, what they see and hear is reality and they will become more and more angry, frustrated and embarrassed when you tell them they are wrong. Think of it this way, there is generally no harm in what they believe to be true and so why make a big deal of it.
A funny example is that Josie believes the TV broadcasters can see her and that they are waving to her and talking to her directly. For years we tried to convince her otherwise, and we got nothing but more frustration for everyone involved. Now we just roll with it and acknowledge what she believes to be true and everyone is much happier.
Show up with Love
The bottom line is to show up with patience, love and an open heart. Let them talk without correction. Understand what they find joy in and create that space for them all while reassuring them that they are safe and loved.