This Season

Lark

This Season

Lark
A group I belong to on Facebook has postings of caregiver's wondering if it is wrong to wish for the suffering of their loved one to be over or even for it to be over for themselves also. One of the people posting wondered if the Christmas season may be bringing on a stronger sense of the despair and need for relief. I posted a response which I will share here as a blog. I said in that group what I would like to say to all of the caregiver's I know and have yet to meet. So here it is:

I struggle with this thought process these days. My husband has been on a longer decline than he has had before and I watch things change for him in tiny ways that are beginning to add up. He has not been able to walk well for a very long time and he only leaves the house to go to the doctor's office. His choice. The effort to get to the car, get buckled in and arrive and go into a place is more than he can handle. My thinking about what will make him happy is not his thinking of what will make him happy. Mostly he wants to do the routine we do every single day which is sleep, eat and watch TV. These happen in greater or lesser degrees every single day.

I am fortunate that he can talk to me and with me. We do not have rocket scientist conversations but I don't think we ever did have them. His long-term memory is sharp but his short-term memory is fickle. We watch the same shows on t.v. more than once or even twice. Often he thinks it is the first time he has seen the show. He is incontinent and he knows, at times, what he has lost and at times I don't think it is part of his thinking. He tends to see what he has lost if something frustrates him physically. He has had frequent dizziness and weakness lately. He has voiced that he wishes this would stop and be over. But the next day he is not in a funk. I swear I don't think he carries the mood over from the day prior. His ability to walk is highly compromised and he gives out of energy quickly. Recently I was one more time, fully aware of this disease and what it is taking from him and from me. My heart ached and I wondered how long this can go on.

For me, and this is only for me due to my relationship with Christ, I believe that to the best of my understanding my job is to walk this out with Robert until the time is over. As a result, I do not dwell, often, on that end. I use to stare at it and think of all that I am missing and I use to believe this is too long of a journey to be asked of me. Somewhere along the way, this passed from me. I don't know if surrender is the right word. I am not particularly a good person or good at suffering person. I will just leave it at this and it is from my heart. I do not in any way judge what anyone says in the group. I understand the emotions, helplessness, and agony all too well. People feel sorry for me at times and that makes me angry and it hurts because, I have to face it, I feel sorry for myself at times. I am 66 years old and I wonder if this is going to take up all the remaining "good" years...whatever that means.

I believe the holiday season can be cruel and make everything so vivid when held against the expectations and memories of better times. I am choosing to make Christmas just another day this year. I can celebrate my faith any day of the year and I can choose to let go of what I wish would happen. It has been over 16 years since I could go visit family for the holidays. My mom and dad moved near us 16 years ago and I was the only family they had for holidays. My father passed away and my mother moved to be near my sister when my husband needed increasing care. Now I am here for another reason and I lost the angst and sense of "me" somewhere along the way. I have had to reshape every single expectation in my life for one reason or the other over these years.

My heart is with each of you this season. My heart joins each of you in the sorrow and the exhaustion of caring for a loved one. I pray God will give you the peace that passes all understanding and that, whatever choices you need to make, you will feel strong and true to yourself and your loved one. You are amazing men and women. You bless me.

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Helen

Thank you for sharing this with us, Lark. I identify with everything you've said. It's affirming and revitalizing to see it in words and know someone understands the journey.

Jenn

Wow, you put into words what had been in my heart, but could not verbalize. I took care of my Mom with Dementia for 10 years. She passed in September, but I am still feeling a little guilty for wanting the struggle to end for everyone. For her, for me, for my family.

frogger16

Thanks for sharing Lark. As always, \"well said\"! \r\nI relate to most everything you described...I had to chuckle when you said \"We watch the same shows on t.v. more than once or even twice. Often he thinks it is the first time he has seen the show.\" I turned 67 recently and also \"wonder if this is going to take up all the remaining “good” years…whatever that means.\" I believe my hubby & I will see each other through this. In a weak moment recently (night time), i was overwhelmed with tears & how I could carry on, contending with limitations of a slow to mend right wing, & sore throat/cough Ive picked up. My hubby had been lost in TV show...suddenly I hear him consoling me the way he use too before his disease hit. It was a beautiful moment where, care, love & healing poured from his being to me, once again.