In the care home, i walked up to my gaunt and ephemeral-looking man, who asked, who are you? After he understood it was me, he trembled and hugged me intensely with tears in his eyes.
We came home to a busy day in my home office and he slept most of the day and all night.
The next day, things changed. He was increasingly anxious, not helped by my busyness – it being press day. With a sad resignation, I gave him extra meds, as he babbled about Hitting the road. I felt so rotten, because at the Lodge he again had no extra meds in a week.
I can’t seem to get the hang of it and it is clear to me that he is better looked after in the Lodge, no matter what he thinks, and no matter how hard I try.
The truth is, I have a life of my own which constantly distracts me from his needs. I do not even have the desire to do any more than I have for the last 10 years. Having cut back and back and back on my involvement in my career( not totally unhappily because I did used to work too hard although I enjoyed it) I just don’t feel I have any more to give.
The Seniors Health nurse, who phoned today, went out of his way to tell me I had done a great job of caregiving to date, and I sort of believe him.
The trouble with this disease is that no one ever wins. No miracles. No cures. No matter what you do, how hard you try, this disease always wins and steals your love further and further away … until death sets you both free.
CaringCV 
What the nurse told you is certainly true. You’re right to believe him.
And you’re also right that no one wins with this disease: both you and Don are suffering ongoing losses. Your feeling of not having any more to give is probably right too: that’s where family members usually arrive.
My experience with now 3 relatives is that institutionalization ultimately works best for all involved, but the transition can be (nearly) as bad as trying to manage at home.
I’m sure you know all this stuff, but I thought it might help to confirm what you already know. I know I can’t offer a solution, but I care about both of you, and I’m in touch with you.
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Maybe it is a small comfort , but in some ways the fact that the institutionalisation is some what a successful answer is a bonus. When my husband deteriorated badly from heart problems and Parkinson’s Disease, he could hardly bear me out of his sight.. I was extremely fortunate that the lady that met and hired, for one afternoon a week, so that i could shop!! was very acceptable to him .( sadly she herself died not long after Tam , and thankfully sent me my dear friend Debbie) In a way , I was a voluntary prisoner with him, But I do not regret it.
It is good that you can continue the occupation of your choice , even with some difficulties . This too will pass.My sympathy , for what is worth is very much with you!
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Oh Delores, how hard this must be for you. Your last paragraph says it all! XO I’ve not seen him so agitated before. He used to get anxious for a short time and then be distracted by going outside or putting on music. Today he was obsessed with finding you, he swore alot. I had heard him say “Jesus Christ” before, with some annoyance; but today he was really frustrated and was using much more colourful language…he didn’t get mad at me, just obviously disappointed in me for not getting how important it was to wait for you on the street corner. I was glad when I got him in and he ate some lunch and had his meds. Hopefully he’ll have a calmer afternoon. take care, Norleen
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dear Dolores – I’ve never read a facebook comment before, so I was surprised when yours somehow came on the screen. I thought it was heart=-rending and honest. Don’t think that people will ‘judge’ you if you decide Don is better cared for in a Care Home. You’ve been fantastic and he’s been blessed to have had such a devoted wife. Hazel Lennox
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Thank you for sharing your honest feelings with us so publicly! You are not alone in this struggle; there are more and more people in your and Don’s situation. It is a harsh and cruel reality many of us will experience with friends or close relatives. Two people in our lives are going through this also; your sharing helps us to understand and let go and take care! Thank you my friend! You are a gem!
Marlene Smith
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Yes, Marlene – that is part of why i write – to help others see how it is. The other part is….I’m am a writer and it makes me feel better to create something out of this horrid experience.
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the journey is so hard at times. thank you for sharing the hard in the journey and the honesty that many others must be aware of or are coming to realize in their loved one. may you have peace with your decisions of love……
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