I am blessed with friends. I truly am. And they are wonderful to hang around with. When I took my mom in, I honestly did not see it would be 24/7 and hanging with friends would become something special. That I would have to find babysitters, for an 88-year-old-woman. That I would never, ever be alone (sometimes I get followed to the bathroom, or if I am out of sight for too long, she comes looking for me. And sometimes it is rather uncomfortable to be found. LOL). And sometimes I feel like some of my friendships are strained. Because not everyone wants to hang out with my mom all the time. Because I cannot generate things like, “Hey, let’s go to lunch!” on the spur of the moment because I don’t get free moments like that. Or to try to plan a lunch out ahead of time, with no reliable respite care. It is not fair to drag my mom to all the events with my friends. And as this disease progresses, I am going to get even less able to be spontaneous, or to get away for a few hours. I haven’t seen a dear friend in more than 2 months. And I am sure it is because I am just not available like I once was. I come with baggage – attachments – strings. And I know it is hard. I truly do.
One of the hard things is that even when things work out and I am able to get away, the return is stressful. When I am gone an hour, my mom thinks it was all day. When we go together and run errands, after we are home she is very cranky. She gets snippy and is so tired. And she does not recall a moment of our day out together. Today, we went to breakfast with my patient daughter-in-law and granddaughter. Our youngest son met us there. Then we went shopping. And on the way back, hubby met us so we could look at gardening supplies. We ended up finding a rug for our bedroom. It took much decision making and discussion in the store. When we got home, I showed my mom the new rug, all laid out in our room. She went on and on about what a lovely rug it was and what a surprise I got a new rug. She had no memory of the day we had spent together. Not even how she hung out with her great-granddaughter, who took her by the hand, and said, “C’mon, buddy…” as they walked through the shop.
And it makes me sad. Because we had a great time. She remembers none of it, and she is tired and cranky. And it makes each subsequent journey that much more difficult. And the deeper into this she goes, the more isolated my life becomes. I have read so many articles and blogs by other caregivers who lament the loss of their own lives. I really did not think it through, when I invited mom to come here. I really didn’t. I don’t think any of us who do this truly understands it, until we are in the trenches of it. Today mom lost her pajamas. I had put them under her pillow when we made her bed. She was walking around the house, in her shirt and undies, looking for them. After I went to investigate, she is pulling her summer jammies out of a drawer, saying, “Oh here they are!” And I told her those were her summer pj’s..and I looked and found her jammies on the floor in the back of her closet. Next to the Depends bag, which she fights me on every night. Anyway, when I pulled them out, she pounds her head and says, “The sooner I leave this life, the better. I am not good for anything. I hate my head. I feel so stupid.” And as she ranted away, pounding her head, I just sighed. I have tried comforting her when she gets like this, but she rebels and stiffens and doesn’t want it. So I have learned to leave her alone while she futzes around in her room, slamming drawers and closet doors.
The last thing I want mom to feel is that she needs to die. Ugh. And I get her frustration. Because if she knew the impact of her disease on the lives of everyone around her, she would totally hate it, as if she doesn’t hate Alzheimer’s already. But I know she would hate what it is doing to my life. I feel bad that I don’t reach out more, and try to get time with others, to enjoy being more social. Honestly, some days if I can make 3 meals she is satisfied with, take care of my husband and son, remember to feed the dog and the cat, and get myself to bed at a decent hour, I have no more gas left in the tank. I am done.
My dream is to stay at the hotel above. It is called the Alyeska Resort and it is in Girdwood, Alaska along the amazing Alyeska ski slopes. The views are just incredible – summer or winter. My dream is to go there – perhaps with my daughter-law – with no kids, no mom, no husbands, and just books and some wine. I would look out the window, maybe walk the trails, and hang out in the amazing lobby (picture below) and forget all about Alzheimer’s and stress and being lonely and sort of needy…and just breathe deeply, and dive into a good book that is in my ever-growing TBR pile. Someday. Someday. Not today or tomorrow, but someday. I hope my friends will wait for me. And still seek me out, even if I am hiding away in my house, because I cannot get away.