As most of you know, I moved away from my parents for my husband’s job about a year ago. The past year has been quite an adjustment for me, as I was used to seeing my mom a few times a week and now I only see her a few times a year. It has been hard not being there for her, but it has probably been harder not being there for my dad, her full-time caregiver. Although he has in-home care every day of the week and family that lives close by, I still feel guilty for not being there myself.
As we recently celebrated our one-year Floridaversary, I can’t help but reflect on the past year and the range of emotions I have felt. While I love living in Florida and have already made some good memories here, I feel like my home and my family are constantly tugging at my heart. It’s a crazy notion that I can feel so settled in a place and yet, so unsettled in my heart. The guilt. The sadness. The longing for someone who isn’t even really here anymore. It all sucks. But the thing that I am feeling the most, probably now more than ever, is helpless.
Making the decision to move away was not easy. At home, I helped my dad out quite a bit. Even though he had in-home care, I was always there to step in if someone called out that day or just didn’t show up. I often helped during the off-hours or filled in to allow for more coverage. I would go with my dad to his doctor appointments and drove him to the hospital when he had surgery to remove melanoma on his face. I picked things up from the grocery store for my parents and moved their bedroom downstairs when my dad finally agreed that it was unsafe for my mom to go upstairs anymore. Granted, I didn’t do nearly as much as my dad has done every day for the last several years, but I did a lot. And even though it was incredibly stressful and overwhelming at times, it felt good to help out.
Since I moved away, I haven’t been able to do any of those things. I try to help out if I can while I’m home for a visit, but it isn’t nearly enough. It doesn’t even put a dent in things. The most I can do is be supportive of my dad and check in with him to see how things are going. My dad isn’t much of a talker, especially when it comes to his feelings, so this can be extremely difficult. Still, I text and call him to check in as often as I can. What sucks the most is when things aren’t going well. When he opens up to me about how hard it’s been, there’s nothing I can do. When he tells me that there are ongoing problems with the home care, there’s nothing I can do. When he tells me that he doesn’t have coverage for a certain day or time, there’s nothing I can do. And when he tells me that my mom is getting worse, there’s nothing I can do. I feel so incredibly helpless.
The one thing I’ve realized though is that it doesn’t really matter where I live, I would still feel helpless. Just like the guilt that I carry around day in and day out, the helplessness has always been there. I am someone who likes to fix everything. If there’s a problem, I want to do whatever I can to help. I want to fix it. The problem is I can’t fix Alzheimer’s. I am helpless against it. Deep down, I know the only thing that is going to help my dad or make him feel any better is if my mom suddenly didn’t have Alzheimer’s. There’s absolutely nothing I can do about that.
I am only human and I can only do so much. I know this. But it doesn’t alleviate the helplessness I feel. I know that it’s not my fault that my mom has Alzheimer’s and I know that I can’t make it go away. Obviously if I could, I would have done that a long time ago. I also know that I still have a life to live and my mom wouldn’t want me to give it all up for her. But when your dad is telling you that your mom shit her pants three times in one day or that he’s been taking care of her by himself all weekend because he didn’t have any coverage, how are you supposed to feel if not helpless?
Even if I was right there by my mom’s side every minute of every day, I would still feel helpless about some things. Even if I did everything I could to help my dad. Even if I said and did all of the right things at all of the right times. Even if I gave all of my heart and soul and life to fix whatever I could. There are some things I just can’t fix. Feeling helpless is inevitable.
I’m going to close this with a quote from Lady Gaga’s song, “The Cure,” which my friend, Jeannine, so awesomely pointed out to me.
“If I can’t find the cure, I’ll
I’ll fix you with my love
No matter what you know, I’ll
I’ll fix you with my love
And if you say you’re okay
I’m gonna heal you anyway
Promise I’ll always be there
Promise I’ll be the cure.”
Do what you can, when you can, and forgive yourself for all the rest.
As I cared for my young husband with Alzheimers it became more and more difficult even with my mature and all-in son nearby to help. It got to a point where neither of us could make it theough a day alone. We needed someone to relieve us mid afternoon. As I asked the question “How do I know when its time to place my husband in residential care?” The wise answer is “when it gets to be too difficult for the care giver”. Your outside perspective on the criticality of the need may be the just the help that is needed.
I agree. It gets to a point when it becomes too much for the caregiver to take. There’s no need to run yourself into the ground caring for a loved one. I wish my dad would agree, but he is hell bent on keeping her home no matter what we say. It’s hard. Thank you for reading.
My husband is 62 and has behavioral frontal Temporal Dementia. My daughter and I were his caregivers. It became too much for us. The stress was enormous. He was up at all hours of the night. I had to have heart surgery las week. (I am sure stress played a huge role) We aren’t too thrilled with where he is at tho. It is a wonderful facility but everyone there is 80 something and usually asleep. My husband needs activities and structure. Maybe some people who are younger and has the same diagnosis. I am ready to move anywhere in the country to help accomodate him. Not Alaska tho.
I’m so sorry you’re going through that! It must be so difficult. I hope you find the right place for him. Thanks for reading!
Tracy, if I may: moving is not the answer. You will not find what he needs anywhere. And YOU need to be where you get the support of your family, friends and neighbours.
The problem is that just when you think you’ve found THE ANSWER to your problem, a new problem arises!!
I live in The Netherlands, it is said we have the best dementia care in the world, but I’ve been at my wits end trying to find the care mom needs…. we’ve still not found it.
So now we ask people to go visit and offer company and entertainment, walks and talks. We actually pay some girls to keep mom company a few hours a day. It is not perfect, but it works for us.