One time my father jumped out of a moving car. My sister and I had taken our parents out on a day trip and we had just returned home and before I had stopped the car (I had barely approached the curb), I heard the back door open and my father jumped out. He landed on the grassy boulevard and rolled over a couple of times, then quickly erected himself and announced, “I’m dying for a cuppa!” (He was in his eighties at the time.) Although in shock, my sister, my mother and I burst out laughing and went inside to make tea. From that point on we referred to this incident as “the jump.”
Whenever someone insists that they are not too concerned about their parent’s dementia…”I’ll know the signs when I see them.”…I tell them this story, “the jump.” We, too, thought we would recognize the signs and yet we continued to delude ourselves and denied that anything was amiss (even though our father had jumped out of a moving car). We ignored the signs of my father’s dementia because we didn’t want to face our fears.
Of course, there were other signs that Dad had either Alzheimer’s or another dementia-related disease, but our family continued to dismiss them. Yes, my sister and I would quiz our mother on his changing behaviours, but she always reassured us that he was fine. “He has macular degeneration as you already know, and he is almost deaf which is why he makes some errors in judgement. You girls really are just looking for problems.” And we believed her because we wanted to believe her.
Later, when I was caring for my parents on a full-time schedule, I was still unaware of all the signs (visit Alzheimer.ca for a list of the warning signs) such as memory loss of day-to-day practical functions; forgetting how to perform routine tasks; difficulty with speech (my dad hardly talked anymore); shunning hobbies, friends, and activities (my father suddenly stopped his daily walk out of the blue); changes in personality; and little things like…being overwhelmed when a television show was on, wanting to go to bed extremely early (he went to bed his whole life after eleven pm news). My father refused to go to the doctor and my mother refused to allow me to take him. (She was Power of Attorney.) As time passed I realized that my mother was forgetting things, too, but she insisted she was just tired. Her physician agreed that she was overwrought and that her heart wasn’t very strong. So all of us continued to stay in a state of denial. We were all too tired and over-stressed from lack of sleep, and frightened of the future.
Many of us who have travelled this journey of caring for someone who has a dementia-related disease write in journals to process our thoughts, or some of us blog – to inform and to support others who are on this similar path. I blog about acceptance because I believe that when we do not face our fears of what is really happening...reality...we suffer.
Acceptance does not mean that we give up or give in to the disease nor that we choose to be okay about the disease. Acceptance merely means that we give up the struggle of non-acceptance (denial, dismissal, ignorance, and all of the emotions such as anger, fear, anxiousness, guilt, etc.). Once we make the choice to accept the new reality, we will find some peace. Acceptance can lead one to a path of kindness and compassion and love. How? Because we empty our hearts and our minds of fear and anger and guilt and resentment…and now we have a space to allow new emotions to enter. We have space to allow wisdom, information and support to enter. We open up to other people – many who also are dealing with a family member with a dementia-related disease. We share our stories and our thoughts and fears which lead to forged connections. We become expansive and begin to see that there is no wrong, nor right…there is only the reality of what is, is.
Acceptance does not erase the sadness nor the grief…but acceptance allows us to grieve during the journey without guilt. Acceptance allows us to see that we are not at fault; nor is the universe out to get us.
Acceptance will lead you to lessons and gifts that will support you on your journey. Acceptance will transform you.
As bloggers, what do we want to tell someone who is just beginning this path? My intent is to share my lessons (and I call my lessons, gifts!). Some of the lessons I have learned are simple, but life-transforming. And some lessons are just practical and how to care tips that assist the family who is struggling in the beginning.
In the beginning, the first step is acceptance: Live in the moment and learn to appreciate it (and all its facets – good or bad). Recognize that the only thing that we can change is our own energy.
- Listen to your instincts. Whether your instincts are screaming something’s not right or you are just getting a nudge or two from your inner self, believe them. Trust yourself.
- Involve your family. Each member will have unique gifts to bring to the conversation and the care plan.
- Be prepared and forewarned (or forearmed). When you approach your parents to discuss the behaviours or signs that you are recognizing or suspecting, be prepared. Do your homework – visit your own doctor to ask questions; visit various agencies such as Alzheimer’s office; visit websites to become informed about dementia; in Canada we offer Community Care Access Centres, make an appointment and ask questions and inquire about options; and set up a plan for the future.
- Learn the signs of Alzheimer’s. Visit websites.
- Approach your parent, calmly and with love, kindness and compassion. This might be one of the most difficult things you have had to do – talk to a parent about your suspicions.
- Do not go into the conversation with too many expectations – you are only trying to open the door to understanding. Do not be bossy, overly assertive, or aggressive.
- Ask your parent if they would be agreeable to a physician’s visit and reassure your parent that you will accompany them to the doctor’s. Be honest and candid: “We have concerns.” Above all, reassure your parent, “We will do this together.”
- Once a doctor has seen your parent, a series of tests will be done. (A lot of your fear is facing the unknown…at least now, you have some answers and support.)
- Now you can make a plan for the future. Address financial and money issues, and care issues for present day and care issues for the future.
- Build a team – doctor, social worker, local Alzheimer’s office, family members, friends, neighbours, church members, support groups – anyone who can support you in your journey. (A neighbour who will take out the garbage or mow the grass…it all lessens your workload.) Visit Sharethecare.com for support, too.
- Honour your own body, mind and spirit. Look after your health. Get plenty of sleep and eat well.
- Treat your parent (and yourself) with love, kindness and compassion.
- Look for joy and renewal. Play, dance, sing, laugh. Live!
- Seek acceptance. Whether you meditate, pray, seek counselling, read books…when you accept the diagnosis, you will let go of frustration, guilt, resentment, anger and fear. Accept that your loved one has a dementia and now needs your understanding, and your presence.
- Live in the present moment. Pay attention and appreciate it. This is the first step. Change your energy. Don’t waste precious time in the past or worrying about the future. You have no other choice if you want to enjoy today.
- See caregiving as a rare opportunity to connect with your parent or as a gift.