Despondency does no one any good. Depression doesn’t help. However, sometimes things get hairy and you just need a time out. Unfortunately, when you are a caregiver, there are very few ways to get a time out for yourself. All the literature tells us we need to make sure we take care of ourselves. And then there are the books that people recommend we read. Who has time to read books? Ha-Ha-Ha.
One of the hardest things they talk about when caregiving is the loss of your own life. Friends try, but fade away. It’s hard to always have to share your friend with their loved one…we understand. It’s like group dating! Activities wan, because there is no time, or someone to help watch your loved one, while you participate. Family members start having things to do, that do not include you or the loved one you are caring for. And I can say, from where I sit, until you are living with this 24/7, you truly do not understand what this is. To top it off, when the person you are caring for has Alzheimer’s, it is only going to get worse as the disease progresses.
They call us the “sandwiched generation.” We have children at home (although my baby is 18) that we are responsible for, and now we have an elderly parent we are caring for, who is also living with us. Sandwiched between the needs of a teenager (or younger child) and an elderly person. Sandwiched between the couple that you are, and the needs of those you are caring for. And it is hard to find common ground. Tensions run high and if your loved one cannot communicate well, or is easily confused, they can still decipher those tense moments and know something is not quite right. And then they react however they need to (or are able to) and it can help spiral things out of control. Tempers flare and the day seems ruined. I have never had months like this, where each day is a roller coaster and you have no idea what you will awaken to, nor how it will progress from there. And it can wear on your own psyche, and sense of well-being. Always on edge wears on you. It is like we adopted a stubborn 3-year-old with an 87-year-old’s sense of self, coupled with changing roles in life of mother/daughter to caregiver/mother. Stir in outside pressures and you have a cauldron of emotions. Today, tonight, I am drained. Empty. And so tired.
Up here, in the far north, our daylight hours are shrinking. Sundowner’s syndrome becomes a real thing. We go to bed in the dark and we wake up in the dark. It can be disorienting for us “normal” people, but for Alzheimer’s patients, it presents an additional issue we get to deal with. In order to take a break from it all, I decided we would go shopping, and we got my mom a hair cut. Trust me, that exhausted us both. But there were smiles and laughter and lots of girl time, and there were 7 pairs of jeans, in all different colors! Jeans! For my British, proper mom!! Miracle! We bought light green, raspberry, pale blue, tan, brown, and brown/black combo in pants, alone. And we found 8 sweaters in varying degrees of color combinations. We spent 5 hours, between the hair cut and shopping, bringing home a veritable bounty, and a big smile on mom’s face. Years ago, my mom worked at a local Thrift Shop and she loved it. So when I suggested we shop at one, she was all for it. The coup was finding a gorgeous dusty rose, ankle length, down coat for just $20. Her 5 year-old, great-grandson, two days later as she wore it, said to her, “Great grandma, you look like a princess in that coat.” It made her day! He got lots of hugs, too!
In amongst that two day synopsis are the parts of Alzheimer’s that are rough. After being out and shopping for more than 5 hours, my mom did not recall that we had done any of it, after walking inside. She did not remember we had arms and bags full of clothing to bring into the house. She went to put her purse away and when she walked back out to the living room, she asked where I got all the clothes I had laid out on the kitchen table. I told her they were hers. She was shocked. I showed her each piece and it was like she discovered it again, for the first time. At least I know she really liked each piece, because she liked each one all over again. I reminded her of her hair cut and she felt her head and looked so confused, so I showed her, in a mirror, how lovely she looked. Then she tried on her “princess” coat and was smiling because she loved it, all over again. The next morning, I had her go through each piece again, as we removed the tags, so I could wash it all. As the day progressed, it was me, reminding her over and over again of all her new clothes, and her haircut. That is Alzheimer’s.
We got our first snow. My mom has lived in snow states before, but they were typically desert states – Utah and Arizona. Their snow came and went. Here, it stays for 6 months or more. Only one person asked me what her reaction was. Only one. She saw the snow and looked at it, and suddenly she was shivering and her teeth were chattering. Literally. As she stood in the warm house, in her flannel PJ’s, robe, socks, and slippers. But she saw snow, and it made her cold, in her mind. She is acclimatizing slowly, even though as the sun rose in the sky, she did not understand why it was inappropriate to wear peep-toed, sling back shoes with socks in 2″ of snow and 23-degree temperatures. I need to hide those shoes until spring. LOL. She is learning that sunlight does not equate to warmth, it is just light. And for someone her age, in her condition, it is hard to learn anything new.
When we chat about what we are going to eat, regardless of which meal, mom always suggests, “Let’s just have peanut butter and jelly sandwiches.” It can be any meal; simple is easier for her. Meals with Alzheimer’s patients are interesting. Mom can no longer cut her own meats or other foods, and so she won’t eat what she cannot cut. Now, when I serve something that requires a knife, I present it to her already cut. We tell her it is because we know how her arthritis in her thumb hurts her, and it is that. It is. But it is also her confusion on how to hold them both, and then use them they way they were intended. So many things have gone that way. I am hoping we can phase out make-up soon. LOL.
Each week brings it own surprises and disappointments, and each day is something new. Some days are stellar, like our day of shopping. Other days completely do me in, when she refuses to participate in this life, insisting on living like she is on a South Pacific Island somewhere. I am prayerful that the future will be easier and easier, as we all settle into our new lives together; as her medications are evened out and she becomes accustomed to their affects. Every morning, I try to wake with anticipatory joy, rather than dread. I push the negative away, applying hope to my moments in the early, dark mornings. Each day is a gift; each moment I get with my mom is precious. And I endeavor to appreciate each of them. Some days I am a rock star; some days I fail miserably and it undoes me.
Today we get to venture out and run some errands. We get to see her doctor, among other things! Even though there is snow on the ground and it is all cloudy, mom is okay because she thinks it will get warmer as the day progresses. Still working on the concept of sun as light, and not warmth. I am hopeful she will learn that up here, snow hangs out for months, which means it is cold for months. She threatens going back to CA, but she knows on some level she is staying here. She gives me the most amazing hugs every night. Even if the day has totally sucked, we get hugs at night. I live for those moments. And today, I think we’ll do PB & J for breakfast…on toast.