My mom has “stage 3” Alzheimer’s disease. It is not static; it is progressing. And so, I had a long chat with my sister yesterday. I call her my sister, but she is officially my “step sister.” And that seems just weird to call her that. We are sisters in our hearts. And she does not have a sister from her parents, and neither do I – it works out perfectly. We met when we were both in our 20s. Our parents fell in love and began living together, and after much pressure from us kids, were eventually married. My mom’s husband, aka my other dad, passed away just three years ago, from a very short and ugly bout of cancer. And it seems like he’s been gone forever. He will always leave a hole in our lives. To my children, he was their grandpa, not their grandma’s husband. He always made sure to let each of us know how much he loved us. And we all returned that love. He was an incredible man. And he loved my mother so very much. She knows he is gone. She kisses his framed photo each morning upon rising, and each evening at bedtime. My sister reminds her so very much of him. And she loves my sister as her own; even loving all of her husband’s grown children as her own. And her grandchildren through him, too. My mom was diagnosed with Alzheimer’s a couple of years before my stepdad became ill. But at his death, it became obvious we could not let her live by herself. So, we moved her to a retirement home just after my stepdad passed away. My brother could not take her, and I live thousands of miles away. She is so attached emotionally to my sister, and we gratefully found a place just 5 minutes from her house, in sunny Southern California.
Today, we came to the conclusion that where my mom is living is no longer working. We’ve skirted this issue for months now. Not only is she beginning to require more care, and this facility is not a memory care facility, but she is also no longer happy there. She knows she is not with her family. (She calls it her “prison.” She says it’s a beautiful one, but it is still a prison). She is missing the interaction with her kids and grandkids, and even the great-grandchildren she has. And we came to the almost inevitable conclusion that we need to move her up here, to be with me (I am the oldest and sort of expected this to happen – eventually). But, to actually live with me. And now my stomach is in knots. We are almost an empty nest, and I just turned 60 years old. My mom is 87 and healthier than I am (other than this horrific disease)! I. Am. Scared.
God never gives us more than we can handle. I know this. I do. He also has a great sense of humor and irony. Do you see that flower up there? The Forget-Me-Not? It is the flower of the Alzheimer’s movement, as is the color purple. I recently got my first tattoo (don’t be too shocked) and it is purple. I love purple. I reside in Alaska. Do you know what the Alaskan state flower is? Yep – the Forget-Me-Not. See? God is smiling at me and my panic.
“…but if any widow has children or grandchildren, they must first learn to practice piety in regard to their own family and to make some return to their parents; for this is acceptable in the sight of God.” 1 Timothy 5:4
“Honor your father and your mother, that your days may be prolonged in the land which the LORD your God gives you.” Exodus 20:12
“Even to your old age I will be the same, And even to your graying years I will bear you! I have done it, and I will carry you; And I will bear you and I will deliver you.” Isaiah 46:4
“But if anyone does not provide for his own, and especially for those of his household, he has denied the faith and is worse than an unbeliever.” 1 Timothy 5:8
On and on go the admonishments to care for one another. The admonishment is not just to our own flesh and blood – “So then, while we have opportunity, let us do good to all people, and especially to those who are of the household of the faith.” (Galatians 6:10). We need to be taken outside of ourselves and our own needs, to care for the “least of these.” (Matthew 25:10). And I am being called in a very personal way, to care for my mom. And still, I am scared.
It’s rather ironic that we just celebrated our youngest son’s 18th birthday and are talking almost daily about his future and college and becoming an adult…yada yada yada…and then I talk to my sister. I jokingly offered to let my mom live with her. She said that she and her husband are actually thinking of retirement and selling their big house…maybe even living in a motorhome for awhile. They love having an empty nest. Ha-Ha. Further irony? We downsized when we relocated here. We gave away and sold everything and put what we could squeeze into a 25-foot u-haul trailer to live here. My husband and I were recently discussing our dreams of a camper/trailer we could haul all over the state, going from fishing hole to fishing hole, in our old age. Sans kids. Possibly allowing grandchildren! Ha-Ha.
I am flummoxed. There is just so much to consider, becoming the caregiver of an elderly relative. We did that for my paternal grandmother. We still had all our kids at home. She lived with us during her final stages of life, which ended up being just a few months. The house we owned was large enough to accommodate her and her hospital bed, as well as all the other equipment and space she needed. We met an amazing hospice staff and they came and went at all hours of the day and night. But it was such a blessing to share in that with my grandma. I treasured those last months and moments with her. I was glad to do it. I loved her dearly, and still I miss her. She made us laugh all the time. She was like a second mother to me. My mom and I have always had a rather contentious relationship, because I am somewhat like her, but also like my dad. I infuriate and frustrate her because of how much I am like my dad, her ex-husband. I moved out the moment I was 18 and only moved home when I was around 20-21, coincidentally right when my brother moved out to get married, and my dad left. I was there with her through her divorce and subsequent bout of breast cancer. But that was more than 40 years ago now. We held each other many days and nights, mourning the loss of our family unit, and her health. It was a devastating time for both of us. My mom is not a quitter. During those months of radiation and chemo, she announced, “This is not what will take me out.” And she meant it. She fought cancer with everything she was. She asked the American Cancer Society to leave our house one afternoon, disappearing into the back of the house. She called me back to her and said, “Please ask them to leave. If I listen to how depressing they are, this disease will kill me. And I have no intention of dying. Get rid of them!” And I did! She is cognizant that she has Alzheimer’s. She hates it. When she is lucid and we can talk about it, she bemoans the fact that she knows she forgets things and people. She thinks others will think she is stupid, because she cannot remember them or events. We re-assure her that she is not stupid. We just repeat things so she can grasp onto them. But nowadays, that ability to grasp new things is passing her by. And her ability to remember all of the people in her family is also passing her by.
Alzheimer’s is one of the worst diseases I know. My mom is a healthy woman. She isn’t on medication, except for the Alzheimer meds, which are no longer effective. She has only gone to doctors for illnesses, like her cancer or when she hurt her shoulder and needed surgery. She rarely even catches a cold. But this disease is ravaging her mind. And it hurts to see. If my mom knew she was like she is, she would hate it. She was always so put together. Her outfits always matched. She still wears matching jewelry, even if it is the same couple of pieces every day. She always wears make up (which I don’t even do) and her hair is always done just so. She used to iron her denim pants. (She never calls them jeans). My mom is a proper, little, British woman. And her life in New Zealand and her years as a young woman are now where she is living, mentally, most of the time. And it makes me so very sad. She remembers the 60s and 70s…she recalls outfits and events from the 1950s. But she does not remember some of the people she knows and loves. And that is hard. And I am scared of having the responsibility for her. Total responsibility. It is almost like thinking of having another baby in a couple of months, at my age.I just had a grandchild! My fifth. That I can do. But this? It intimidates me.
And every time I forget something, I wonder if I am getting this disease. Each time life gets confusing, or when I try to recall something and can only conjure a white wall in my mind, I am fearful. Will this be my fate? My dad is now 90 and has dementia. Because it is a type and function of Alzheimer’s disease, and it is on both sides of my genetic tree, will this be me in 20 years? My mom is only 27 years older than I am. Am I headed in this direction, too? How will I care for my mom if I start slipping away? Will my husband, or my sons, be burdened with all of my family? Will I become that which I fear in my mom? That is a terrifying thought.
But back to my panic and my faith. Back to my current reality. I know that the Lord will watch over us. I know that He intends for us to bond, as a family. Caring for my mom takes me way outside of my comfort zone, but perhaps it is where I need to go. One of my friends, and a leader in my company, said in a live feed yesterday, that whatever it is we are fearful of, is probably what we need to tackle next. And I am deeply fearful of taking care of my mom. My entire world will be turned upside down. We will have to move. Seriously. Like in the next few months move. And packing up this house and relocating again – I am seriously tired of moving. Horribly tired of moving. I don’t know how many moves I have left in me. It’s that bad. We’ve been here for almost 5 years, so I guess it’s time! Ha-Ha-Ha. But this move is so very different. This is a necessity for my mom. For her last years. I am not ready to say goodbye to my parents, to my mom. It frightens me because it is sort of like a final curtain; a devastating ending. I know it is inevitable. I know time marches on and we all come to an end. But having it thrust into your face, into your little cocoon, that is a different experience. I love my mom. Sometimes I need my mom. But she is no longer capable of being my mom, in the sense of me relying on her. And I know, that in her lucid moments, being dependent on me is not something she is comfortable with. Getting in a nurse to assist her is not something she will like, but having me bathe her or dress her would make her even more uncomfortable, although I have done it in the past. The first time I saw what her mastectomy honestly was, and when I had to assist her with her bandages, I broke down (literally fell onto the floor) and just cried. She was standing there, wet and naked in the bathtub/shower, trying to comfort me! My mom is an amazing woman, truly she is. Difficult? Yes. But I will treasure those moments when my mom held me while I was sick. When she held me as I wept. When she comforted ME – over the loss of her breasts and her health and her marriage. My mom has done so much for me, just being her, in all that she is. And I am so not ready for this last stage. Being with my mom, as her caregiver, is almost as frightening to me as losing her, once and for all.