How many drive the car they drive to impress others? Or wear certain clothes to attract attention? Or cut their hair just to entice a mate? Who in this world bases each action or decision on the reaction or perceived reaction from others?
And here I am, under an unimaginable amount of stress, grief and pressure to figure out what to do with Jim and unfortunately worrying about what others will think. Not just strangers, but people who mean the most to me…Frances and Brad. Their current thoughts on the subject and my worry about their thoughts years from now weigh heavily on my mind.
Home care? Institution? Just me and the kids?
I am inclined one way but then I envision having to live with that decision. So I start pulling toward the other solution. Not long after, I think of the original plan. It never, ever ends. Ultimately, my decision really won’t be my decision and I will probably laugh at all of the time and energy I have put into this. The decision will strictly be a financial one not a practical one. And that is really out of my hands.
I find myself justifying so many things with almost each conversation I have.
Earlier this week I chatted with a neighbor. I caught myself justifying. Not long after, I spoke with a casual friend who asked about Jim. Again, I was almost embarrassed as I heard myself repeating the same justifications.
Right now Jim is in a 30 day respite program we have been granted through the Veterans Administration. Wow! What a difference in our home. What a change in me and in the kids. Yet, I have felt the need to justify this welcome reprieve.
But to tell the story of relief is to tell of the burden and the stress and the unhappiness of having Jim at home. Who would ever want to acknowledge that life is better without their loved one with them? Certainly not me and not our kids. But it is what it is. And as I write this, my lungs almost collapse in shock and sadness. What kind of monster am I for feeling this way? How can I be a good wife, a good caregiver, a good person for thinking this, let alone saying it out loud? Me. I am. And I am tired of worrying what others think. Unless you have been taking care of a person with YOUNGER ONSET Alzheimer’s Disease WITH children at home, you are not allowed to pass judgment. You are not allowed to even think that you would do this differently. You really don’t know and could never comprehend what you would do unless you are actually living this very life with the exact same decisions and circumstances. Do I sound angry? I am not. Actually, right this very moment, I am happy. For the first time in a long time, I can breathe and I can focus on being a mom and nothing else (sort of) and it has been so nice. The kids and I have had many relaxing nights, fun days and times of reflective honesty. Yes, before Jim’s disease took hold, our family would have done these things with him and we would have been complete and whole. We are broken and the kids and I need to be able to move on. It is so difficult to try to move on while Jim is still with us. Yet, I don’t really want him to not be with us. Obviously it isn’t my choice whether he is here mentally. It is almost some kind of scientific wonder how he can be “here” physically, but he is no longer “here” mentally. Sometimes he is able to be part of a conversation or have a funny input or something relevant to what we are discussing, but let’s face it, he isn’t capable of being a contributor to decisions and barely can recall what was just discussed. The day to day change one way and then another is amazing if you stop long enough to digest it all. It does not please me to acknowledge these things. He is progressing. We are progressing. Life is hard. Life is complicated.
I often am forced to think back to conversations Jim and I had as he was in the process of getting diagnosed. We had many heart to hearts and he was always very adamant about the kids coming first. I know he had no clue the financial strain this would all have, but he was very clear on what he expected from me: taking care of Frances and Brad.
At this point, I just want to be able to be a Mom. Being a friend, a worker, a neighbor, a wife…all pale. I don’t have it in me to do all of the above as usual. I can only focus on a single point at any given time. Right now it is taking care of Frances and Brad as best I can under these circumstances. Then it is working on care for Jim. Wow. The paperwork and stress is indescribable.
I see Jim. He is happy in the respite. He is getting attention and has activities. He doesn’t have a lot of commotion. He hasn’t asked to come home. He hasn’t said he doesn’t belong there. Bittersweet. I am happy he is happy but his contentedness is a reminder of how far along he has progressed with this disease and it makes me so very sad.
Every time I see someone and tell them about Jim being in respite and trying to decide what is best for him, I find myself trying to justify and explain and to make sure they understand. Really? Why should I care? None of them are going through this. So do I really need to explain myself and what I feel is best for our children? Isn’t it apparent that everything I do is to make sure the kids are ok? Don’t they know that Jim and I had this conversation many moons ago and it is also his wish to put the kids first? Isn’t it obvious?
No, no. I feel the constant need to justify and explain to people who could not possibly comprehend the decisions and the magnitude of those decisions on the future of our family.
Yet, with all of my resolve to be strong and stick to my decisions from so long ago in dark, intimate times with Jim, leaving his care to someone else causes great stress and guilt. How could I ever be without him willingly? What kind of selfish heathen am I? How can I leave him to the trust of others to make sure he is clean and brushes his teeth and puts on clean clothes and stays active? Do they watch to make sure he doesn’t take the tooth brush and tries to clean the sink? Are they making sure he is washing his hair? Do they check to see if he is washing everything correctly?
The torture I feel is immeasurable. There will come a day that I will sit by myself and reflect, gazing at a beautiful scene and wonder how I did all I have done. But in the meantime, I struggle to find a foothold on what the correct choice is. I struggle because I wonder how it will be for me and the kids or because of what others will think? Or because I will lose everything financially? Do I need a retirement? Do I need savings? Isn’t it better for me to have a stable, happy home for my children? But, isn’t it better for them to participate in the care of their father? Won’t that just grow character for them? What if he gets violent again? Won’t it be my fault since I knew this was a possibility? Love hurts and love cuts to the very core.