I invite you to log onto the home page - www.thealzheimerspouse.com - and read the final installment of my blog series - The Evolution of an Alzheimer Spouse - How Have I Changed? What Have I Learned?
After you read the blog, please post comments and your experiences here. Thank you.
Last Thursday night I went back to the singles group, and actually enjoyed it. They are friendly and welcoming, and do a lot of activities. I felt comfortable, and like it would be nice just to have some people to hang around with and talk to from time to time. They were all going to a pancake house after the meeting, and asked me to go. I didn't…because I was so stuffed from a late family dinner that I couldn't even face a swallow of coffee, much less food. But it sounded like fun. On Sunday night there was a dance…and I seriously considered going. I even hung up an outfit in my closet that I could wear. But I wasn't ready…Larry has only been gone for not-quite-eight months. It is too soon for something like that, even though I love dancing. I'm going up to NY next month to see Fort William Henry on Lake George and Fort Ticonderoga on Lake Champlain. They open for the season on May 7 and May 9. I'll most likely be doing those things alone, which I'm actually looking forward to…being able to be on my own agenda. I may stay in a motel one night…have not planned it out exactly yet…I'd rather go back to Beacon, but it may be too much driving.
I had another vegetative weekend of not going out of the house except to take two long walks in the park. But it wasn't a falling-apart grieving weekend. It was sort of a personal, meditative retreat…a time-out. I just wanted to be alone, but in a good way, I think.
This forging of a new life for me is so unpredictable. It is like a gasoline engine running on unrich fuel - one moment we surge ahead sure that finally the wind has caught our sails and we will survive after all, and the next moment the engine sputters and backfires and moving ahead ten feet might require a miracle while the clouds of sadness and doubt catch up to us. (Later: Wow. I just reread this post and this first paragraph is a grammarian's nightmare. It does show the mental confusion that comes with being emotionally jerked every which way. For that reason, I will leave it in and hope the reader finds the right cadence to understand it!)
It makes my head hurt. It isn't even day to day; it is hour to hour. A small slight, remembrance, the chill of a passing cloud, the realization of the terrible uncertainty of life and poof!! The gain is lost.
And like a boxer down, there comes a shake of the head, squinting of the eyes and ever so slowly a clawing back into the ring. It is exhausting. Living requires so much effort, every day, every minute. I have come to believe that a lot of people die because they are just worn out from the struggle to live. Some days that road seems the road to take.
But then, but then a flower will bloom, the dog will look lovingly into my eyes (I know it is for food, but want to believe it is love), a melody with float in the window and it all seems worth the effort. to. plod. on. another. day. Hoping, I guess, for another glimpse of loveliness, the smell of hot coffee, the refreshment of a hot shower. Happiness is truly in the small things, but it seems like I have to relearn that every single day.
I am like Marche, The new life is still very unpredictable for me. Husband is still in the hospital with no discharge date although met with hospice today and they have accepted him when he is discharged. I feel that this next move will be his last. I have as yet not found too much that I really want to do. My son took me to a concert two weeks ago on a Thursday night and I enjoyed it. I am still just getting by with my "to do" list each day and visiting him. I am going this week to my granddaughter's ballet recital and staying overnight at their house and am taking a plane trip in July. So I guess that is progress. I still have pangs of guilt after all this time that I am not caring for him at home but I am absolutely sure I could not do it even with hospice help. I find that keeping a daily routine of work, exercise, visits to the hospital, etc help me to stay grounded. I will look into the survivors spouse group. Right now I do not feel the need to meet new people. But I suppose at some point I will. Thanks Joan for sharing your journey.
You are doing so well, Joan, and I am happy for you. Keep going to places - alone if you have to - I have done this so much since DH passed away. Then I finally met someone to spend some time with, go places with, eat with - and I am more content than I have been in a very long time. Keep up the good work!
Wow, you said it perfectly. The engine that sputtered; the boxer who slowly gets up, shakes it off, and gets back into the ring. That's me to a tee.
If there is any inspiration in my story, it is the DESIRE to live a full life again. But make no mistake about it - that desire is continually blocked by struggles to just get up in the morning and put one foot in front of the other. I carry so much emotional baggage that every step is a challenge.
Joan, What you say about having the DESIRE to live a full life is right on target. Although you had to get over the hurdle of doing things on your own, your love of music inspired and energized you to overcome that obstacle. Doing something like going to a concert alone gave you the confidence to do it again and has led to freedom.
Reading your post made me realize that what I’m lacking is the DESIRE to live a full life again. I can’t claim that I lack experience in doing things on my own; I was single for a long time before I married. My problem is exactly what you put your finger on – I don't have the DESIRE to live a full life again. And I don't have something inspirational, like your love of music, that would motivate me to go out and live. I wonder how many of us are like that?
Myrtle, I'm kind of with you. I've never been truly on my own, but I don't mind going places by myself. I find it to be rather satisfying. I don't have a passion for music - I like it, understand, but I'm not a follower or fan of anybody (I admit I would like to see & hear Celtic Woman). I'm really not into the arts. I guess you could say I've always been "into" the home arts...but there isn't much of that anymore either. I hardly cook or bake, I let the cleaning get away from me until it becomes monumental to me, I really can't afford to redecorate (I used to love to fuss with things for the house). I don't have a lot of physical stamina, now I'm dealing with sciatica....physical therapy (this ought to be good!!!). I'm getting kind of far afield here, but anyway I haven't any idea what I will do as things progress.
My life sounds rather ho-hum, interspersed with an occasional upset with Dan :(
One thing I know for sure about myself is that if I REALLY want to do something, I find a way to do it. But it has to be something I want so badly that I won't let anything stop me. Thinking back on my life, there have probably been less than 10 things that fall into that category, but I made every one of them happen. So I guess there is something in my DNA that fuels that desire. But, it has to be something I want desperately. If it's not, I am a lazy procrastinator.
BTW, when I was 10 years old, I met my cousin's 16 year old best friend. Even though I was only 10, I decided that when I grew up, I wanted a date with him. 11 years later, I got that date. In case you haven't guessed, his name was Sid Gershman.
Joan, That's really inspiring! I've had that kind of determination about some things in the distant past but right now, I can't envision anything that would inspire me. When my husband was admitted to LTC, I assumed I'd perk up within a few months but I guess I underestimated the damage that was caused by the stress of caregiving. And then the brutal winter set in. I don't think I will have a motivating event like yours for a long time, if ever, but I'm hoping to come up with some small goals that I can strive to meet, just to force myself to turn my face away from the past and take a peek at the future.
Mim, I like to fuss with things for the house, too, and in the past, I could get motivated by repainting baseboards or something like that. But caring for my husband at home tired me out too much. When I read about your sciatica, it occurred to me that our physical ills may be contributing to this malaise more than we suspect. This week I learned that, for months now, I have probably had chronic bronchitis which has put a strain on my heart and which should have been treated far more aggressively than it was. Prednisone and an antibiotic have finally allowed me to take a full breath, have given me a boost of energy, and have improved my mental outlook enormously. I wonder if part of what is dragging you down is the sciatica?
Myrtle, it's possible. I was Predisone for a short time, talk about energy!! Also gave me tremendous headaches though.
I'll have to see how physical therapy goes - IF my insurance will cover it. I have my doubts. I hope you are feeling better each day. That old saying is so true - "If you have your health, you have everything". Amen!