I have always assumed that in the ideal world there would always be time for all the things that are important to us, time for the people who are important to us yes, but also time to explore and learn and do all the things we think matter.
But of course we do not live in an ideal world, and I suspect that even the concept of ideal is highly subjective and even illusory, just as the imaginary "ideal mate" is only a shallow half truth, a list of the things we think we want which is never fully realized because we as humans tend to discount the importance of the mundane, the necessary, and especially the things we dislike. We tend to not think about how the characteristics of those we love are deeply intertwined in their psyches with other characteristics, perhaps even qualities that we find less than attractive. In the same way that our view of those we love is defined by our views of ourselves, so is our view of the "ideal" world. Our relationship to the "ideal" directly reflects our relationship to ourselves and our own self-judgement. The truth is there is no ideal, only me, how I chose to function in the world and what I chose to accept or not accept. This is something I struggle with every day, some days more successfully than others. The same is true for all of us to some degree or another, whether we chose to be aware of the struggle or not.
But where am I going with all this philosophizing? Is it really fair to disappear for two weeks and then reappear, spouting mumbo jumbo? To tell the truth, I am not quite sure, but I am willing to trust all the hypothetical posts that have been swirling around in my head during the past weeks are not completely lost, but have found some toehold in my mind and that something coherent will arise from the depths. In the end, this too may prove to be just another illusion.
Let's go back to that concept of "ideal". Nearly two weeks ago I was in Chicago. The trip was good for me, and although it had its ups and downs, it was clearly exactly what I needed. I would have preferred not to come home to the chaos that greeted me upon my return, and I would have said that in the ideal world what is good for me would also be good for G. The truth is that what is good for G probably is good for me and vise versa. But to make that work, I have to stop wishing for the ideal and start living with the actuality.
The simple story is that things fell to pieces on the home front while I was away. The scheduled night aide disappeared and the agency had to scramble to fill the slots. Yes we had help, but having someone new every night was not good for G, whose mind can no longer really comprehend or cope with the unexpected. Sunday night I returned to my hotel room to a flurry of texts that once again there was no aide, and I was on the phone, calling everyone, the angry hen defending her brood, even when that brood is one dementia-addled spouse. Perhaps I overreacted. It is true that I did not have all the information, and that I regretted some things when I returned home and learned more. But I also learned that I made the right decisions, that things could have been much worse.
But as I pondered the whole situation and went through the various stages of coming to terms with the state of my life I realized several things. It was not about me feeling guilty for going away. It was not about me at all. I had to accept that there are two forces at work here. Me, meaning what I think I want, what I think I don't want, my own self-judgements about these things, and what actually is happening around me to the person I love. I knew that we needed more help. That five full days and two half days a week with no night-time help was not good enough. But I was not ready to accept that G really needed 24 hour care. I thought there could be some transitionary period where I could prepare G for the eventual shift. But it wasn't really G who needed to be prepared; I was the one who needed to accept the inevitability of change and decline. I needed to see G with both my eyes and my heart, not looking for some ideal, but accepting what is and making the most of it.
It is not always easy.
The last two weeks have been a period of transition and changes. G was confused and tired. I was a trifle overextended. Nonetheless there were good moments. We went to the zoo. Grandpa held on to Owen's hat while we took a short break for ice cream and popsicles. Moments of silliness still exist.
On Monday we start 24 hour care. I expect the first week to be difficult, but it may not be as difficult as I imagine. G may in fact be more ready for this transition than I. Nonetheless I am planning for a light week, with no particular plans and a pile of frivolous, easily interruptable reading. I am giving myself permission to try not to define myself by what I do, but to just go with the flow and try to be present when needed. This may be the hardest task I've set for myself yet.
It may be a week of radio silence. It may not.
Comments
17 responses to “Wishing for Good, Blind to Reality”
Wow – what a post. I think your epiphany about the readiness for this transition being yours to embrace is quite profound. Given that this circumstance seems to involve ongoing transition, that’s so key. One thing does come to mind though, M: What about his family you have moved close to? Are they unable to manage ad hoc challenges re: G while you are away experiencing VERY necessary personal time? I just hope you are getting an adequate amount of support.
I’m not sure what I need to say to you, only that I need to talk. Life isn’t fair – you know that. It often hands us things we don’t want, didn’t expect, and don’t know if we can deal with. Life, frequently, is very hard. I admire your strength and insight. And I wish you the fortitude to deal with someone else in your home 24/7 – that isn’t easy, I know (really) but it is survivable. Watching someone you love decline is even harder, again, I know. You watch your vision of life dissapte into the future of reality. Don’t forget yourself in all of this – it’s very easy to do that – and learn to trust others to occasionally take care of things. It’s sometimes overwhelming when you realize how dependent others are on you and how fast things can fall apart when you aren’t there to manage the details and that sometimes its more comfortable being there than trying to get away. I will say that you are stronger than you think – we all are. If you need to talk, you can reach me on SG.
I send you my best wishes and prayers for the strength to do what you need to do. I have experienced the horrible disease with my MIL and a dear cousin dealing with early onset dementia. As the primary caregiver you must take care of yourself. You can hire help but you must seek out the emotional support for yourself. It may come from unexpected sources as well as the usual support groups. You do not have to do all of this yourself. Thankfully ( I am assuming) you have the resources to provide what you need. Just don’t be a hero, just be yourself. Most friends and family want to help they just do not know what to do. Don’t be afraid to ask.
I hope that even an encouraging word from strangers can help.
I feel the worry and angst in your words. Please know that you are doing all the right things in a very tough and emotionally draining situation. Do not feel alone. We are all here to listen and help any small way we can. Tina in Va
I do feel sympathy for you. You are living a very difficult time in your life, have been living it for long already.
I believe that writing this post was difficult, yet a relief.
I wish you had someone with whom to share your thoughts with; someone who perhaps has experienced the same. Maybe there is an organized group, which meets regularly?
I too wonder about the relatives, you mentioned before. Where are they?
It is a good thing, that you have the chance to be on your own every now and then.
As others above already wrote, you don´t have to place all your time and energy in this great task.
Last, there is no need for you to feel guilty in any way.
I´m wishing you strength.
Oh such a transition. You are so thoughtful and graceful here. I can’t imagine, of course, what you are really going through. I hope you have friends. And company. And that the trajectory of all this includes joy for you.
I had wondered about you…I had a colleague who went through the very decisions you are making and the strain was often visible on her face. May this week go as well as possible…and may you both find the resolution you need.
Things always fall apart at the worst possible time!
I hope all goes well with this transition. I think it’s the most loving and responsible thing for you to do.
Trying not to steal too much blogging time from the holiday I’m sharing with my husband, but I must reiterate yet again how much I appreciate your attitude and your approach to life in general, but specifically to the challenging situation you face with your beloved partner. I suspect this next move will be better for both of you, but I can well imagine how difficult it would be to commit to sharing the responsibility of care. I wish you strength and comfort, both.
Jerris, I am no hero and although for a long time I did not have enough support, I am well aware of the need for it now. I am finding support in our new place, and I know what I need to do. I realized long ago that I cant let myself be a victim of this disease as well as my spouse
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Thank you Lisa. I have found myself in a good place for this transition, with friends new and old, and support. Yes, sometimes there is even joy. I am not sure I could have imagined that a year ago. It is an honor to think that you find my words and thoughts graceful. That too is a joy.
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Thank you Terri
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Thank you Rose
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Intense, and as you say, time. Something I experienced with my mother: I resisted adding hours not b/c of cost but b/c I had to face that she was further along than I wanted. I found that the caregivers who came were not “strangers” but skillful in ways I was not. Bon courage. We’ll be here whenever you’re back.
My thoughts are with you. Yes, sometimes it’s a question of the readiness of the caregiver, rather than the attended to.
Oh Mardel, I’m sorry you are facing a sudden and difficult transition. You are such a good and loving person.
This is my new name by the way in case you don’t know who I am (formerly Susan Tiner).