Holding the Cup - Mother’s Day with dementia/Alzheimer’s

Holding the Cup 

          

We all must hold the cups of our lives.  As we grow older and become more fully aware of the many sorrows of life - personal failures, family conflicts, disappointments in work and social life, and the many pains surrounding us on the national and international scene - everything within and around us conspires to make us ignore, avoid, suppress, or simply deny these sorrows.  "Look at the sunny side of life and make the best of it," we say to ourselves and hear others say to us.   But when we want to drink the cups of our lives, we need first to hold them, to fully acknowledge what we are living, trusting that by not avoiding but befriending our sorrows we will discover the true joy we are looking for right in the midst of our sorrows. ~Henri Nouwen 

This is a time of year that many of us have a difficult time. Mother’s Day should be a joyous occasion. It is a day that we as children give thanks for our mother and all she is to us. Even when mother has gone to be with the Lord, there can still be the joy of remembering.

Those of us with mother’s who are suffering from dementia or Alzheimer’s or both instead are often given a bitter cup to drink on this otherwise joyous occasion. Sometimes dementia and Alzheimer’s disease are kind to their victims, giving them a happy place to live out their life. Sadly for some of us they give mom a terrible and painful place to live; filled with pain, anxiety, paranoia, and fear. We celebrate mother’s day with someone we don’t really know, who looks like mom but doesn’t act at all like the one that took care of us through our childhood, teens, young adulthood, marriage, children, and senior adulthood.  That mother is gone away somewhere foreign and distant. The one we are trying to love today may tell us that she doesn’t like us, doesn’t trust us, or doesn’t know who we are.

We still love our mom. We still pray for our mom. And we still have hope that during the good days she has some peace. And we say on this day Happy Mother’s Day mom. We love you mom. We are going to continue to take excellent care of you and try to make you comfortable and contented.

In our case, my sister has chosen to leave her job and has spent the past four years living with and caring for our mother. I view this as heroic! This has for her been a supreme sacrifice. My sister is a mom and a grandmother.  She will get Happy Mother’s Day cards, hugs, flowers, and love.  She also is holding that cup sorrow and sacrifice. I pray on this day that she be able to hold that cup and is able to discover the true joy she is looking for right there in the midst of her burdens.

Here is a story from the Alzheimer’s Association that reveals what my sister likely going is through and advice for all the children out there who are their mother’s caregiver. God bless you for what you are doing.

Roberta, I wish you a very blessed and Happy Mother’s Day. I love you.

Muffett's Story

I’ve been the primary caregiver for my mother with dementia/Alzheimer’s for the past nine years. She’s 86 and is fading away by inches and by bit and pieces. It is so unbelievably cruel and torturous to watch someone who was an excellent teacher and active lover of life be whittled away by this hideous disease a tiny bit at a time. I’m convinced she contracted it through hormone replacement therapy, which she had for too long and past the age of 75. I really don’t know how to convey how horrible this is for her and for me. She has suffered more than we can ever know, both physically and mentally. I have given 20 percent of my life to caring for her 24/7. Predictably, my life has received no attention at all. I have no husband, no family, no career, no retirement, no plans for the future. I’ve had to endure my own personal heartaches in silence, including losing several beloved pets over the years, losing relatives and my own battle with skin cancer. Everything is secondary when you are a caregiver. Your life is forfeited, and because this battle cannot be won, you will ultimately fail. There is simply no way to put a good face on this experience. After all these years, I can offer only this advice to other caregivers: You will need God. You will need Him for help and to yell at. You’ll need His guidance, and you’ll need to be angry with Him. If you don’t have Him now, find Him as soon as possible. Establish one caregiver to be the final authority in decisions about care giving. There can only be one chief in this war, but surround yourself with good advisers. Identify your support system, but remember that they will lose interest and, ultimately, not be able to give you all you need. You need to find support within yourself as well. Demand that your doctor hears you and responds to every one of your loved one’s needs. Forget about your own life and give up any hopes for the future as long as you’re a caregiver. Hope will kill your soul. Constant disappointment will destroy you. You can only survive by taking it one day at a time. There is no happy ending with this disease. Fight for quality of life and controlling symptoms. Keep your loved one as involved in life and activities as long as you can and as long as they are able to enjoy them. Don’t expect a medal for being the caregiver, and don’t accept being blamed for not being able to stay awake 24 hours a day and missing something. You’re one person doing the job of 10 people. Go easy on yourself and distance yourself from people who try to blame you. You might get a reward in heaven, but you’re not getting one here. Your only reward is knowing you gave your loved one the best and most comfortable end of life that you could. Set up boundaries to protect yourself. This job will wear you down to nothing, and then it begins to get difficult. Don’t expect a non-caregiver to ever understand what you’re going through. Pray. You won’t get through this without a spiritual support system. First and last, take time to pray. Find God. Find a church, if you can, to help you keep loving yourself and knowing you’re doing the right thing and your sacrifice is worth it. God is the only one who will ever understand everything that you go through. The effort is worth it to see that your loved one is comfortable, safe and cared for. You will not come out of the experience the same person that you went into it. Pray that you will be a better person and don’t let the disease consume you.  alz.org I.N.J.