Epilogue

Annie had been after me to write a guest post for years and I had always declined. She said we were “muddling through leukaemia” together.  Which is true.  But this blog was HERS.  People wanted to hear from her; to get her wisdom; to be comforted by her words and insight; to be challenged about how they viewed the world.  She taught us all so much about strength and courage, compassion and diversity, right and wrong, living and dying.  She made us laugh and cry, sometimes in the same sentence.

Annie died in hospice yesterday morning.  She wasn’t in pain and was comfortable right to the end.   Despite her earlier misgivings about being in hospice, this time she knew it was where she needed to be.  The amazing staff made her feel safe and eased her mind, which is the most precious gift, both of us could have received.

Over the past few weeks we had daily chats about her life and what her legacy would be.  Her wondering wasn’t because of narcism.  Rather it was because she wanted to know that she made a difference.  That she helped people.  It wasn’t about feeding her own ego.  It was about her overwhelming desire to take care of people.  She actually apologised last week for “abandoning her followers”.  Yes, those were her words.  A true caretaker of hearts and souls until the end.

In keeping with Annie’s strict rule of 500 words or less, I offer this as her legacy.  She will be remembered for her kindness, warmth, and generosity, both of time and money.  She had an amazing ability to make people feel important and that she was truly listening to them. Annie showed us how to touch people’s lives and to make the most of every day.  She reminded us that life is short and precious.  She exemplified the tenet “it’s better to give, than take”.

She had a brilliant mind and made people laugh, often and hard.  She taught us to be honest but never mean or cruel.  She was reliable and always put others before herself.  She was a good friend.  And a great baker.  She set the bar on what it means to be a good person. She inspired us to be brave, strong, and kind.

Gone but never forgotten,  I hope you will continue to be inspired by Annie’s legacy.  I know she inspired me every day to be a better person.   I hope you got as much from Annie’s blog as she did.  Now that would make her smile.

Thank you for all your love and support these past 4 years.

xo  J

Annie in a library (where else would she be?) in Vienna.

 

 

 

 

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Visiting a dying person: It’s not you, it’s me

man struggling in water

As I’ve written recently, my strength and mobility have declined sharply in recent weeks. This decline has rendered me housebound, although I am working on that. The walker has helped, as will the wheelchair we hope to borrow through palliative home-care services. J. is willing walk the dog with me in the wheelchair–sounds like quite the workout to me–which will allow me to leave the house without overexerting myself. We are trying to think of other ways I can get out of the house. As summer is now in full swing, it is hard to be stuck at home.

The other problem is that my time at home is spent primarily watching television and sleeping. Would I feel more alert if I had more to occupy my mind? Using the computer is still a challenge. Typing is still difficult, as is surfing the net because my fingers still jump around randomly. I’m more restricted in what I can do. I don’t read much, except for the newspaper or the odd magazine. I’ve lost the attention span that a novel would require.  Trust me, I’m sick of mindless reading and TV. The distractions have lost their appeal.

Since I am mostly homebound, you’d think I’d want people coming to visit, but, surprisingly, I’m finding I don’t. The odd person has dropped by, and I did ask the rabbi to swing by before he heads off on vacation, but mostly I’ve kept to myself. Visitors are exhausting for me, not just because making conversation can take all I’ve got, but because I don’t know if I’ll see that person again, ever.

Something that may be hard for you not-dying people to understand is that I am constantly thinking about whether this is the last time I will see you. Imagine the emotions this raises in me, and maybe in you too. I’ve had plenty of tearful hugs following visits, and those hugs have not been easy.

And so sometimes I’ll say no to a visit, not because I don’t love you or care about you, but because I’m not up to the emotional turmoil a visit will raise. I’m not up to my own emotional reaction, let alone yours. Will I have to support you emotionally through the visit or will you know how to manage those emotions without my help? I don’t know, but I do know I’m not up to being anyone’s support right now.

I know that I can barely keep my head above water emotionally right now, and I’m not up to being anyone’s lifesaver. It sounds selfish, I know, and it is. I don’t know that I’ve ever been so selfish in my life than I have these past months. But I’ve spent many years supporting other people, in- and outside my office, and those days are done. I wish I could still offer compassion but I’m admittedly self-focussed.

I lack emotional energy for anyone but myself. I trust you’ll understand, but if you don’t, I’m afraid you’ll have to catch the next bus. This one has run out of gas,

Decisions, decisions….

Person deciding on which path to take on the road

Dear Patient Followers:

Thank you for all your support after my last post, which wasn’t easy to write. It was hard to abandon you for as long as I did, but I wanted you to know I have not died. I was at home on my couch on a weekend pass from the hospice. Yesterday I had to decide whether I would remain at home or return to the hospice.

While I was at home, my lovely friend, K.. loaned me her mother’s walker, which I’ve used both in and out of the house. I still need J.’s help going up or down stairs, but can now walk short distances with the walker. I’ve also scored a generous friend’s deluxe toilet riser and a little stool for the bathtub. Yeah, old people stuff.

I’m not embarrassed to tell you about these physical supports because they’re helping me get up and move around on my own. I can’t believe I can’t push myself up from the toilet, but my decline in strength over the past few weeks has been profound.

This is what happens when anemia progresses and there is not enough oxygen to feed my muscles. I am weak because my hemoglobin is likely very low. I can’t tell you how low because I have not had my blood tested in some time. Without transfusions–which unfortunately will not make me feel better at this late stage in my illness–I will continue to get weaker. Nevertheless, I did leave the house today, and not just to move from hospice to home. That felt great.

Yesterday we had to decide whether I’d return to the hospice. The hospice was kind enough to hold my bed over the weekend. So J. and I talked. It felt better to be at home with my little family, and although I know the hospice has more supports on site, we both decided I’d prefer to be with my family right now.

If my situation changes, I will seek out the hospice again, and hope that they will have a spot there. (This hospice is small, with only 14 beds.) I will accept the risk that they will not have space for me if I want to return.

How do I ever know what the right decision is and what my needs will be today vs. a week from now? I don’t. That’s what makes decisions like these hard ones. But as it stands, being at home seems right, despite knowing my health could turn anytime. At home I can wake and sleep without interruption.

I don’t miss the middle-of-the-the-night hospice checks involving flashlights shining in my eyes, or the nurses who were a bit too chatty some days, forgetting that they were to be caring for me. Lovely people with poor boundaries. It is difficult to ask a kind but overly chatty nurse to leave my room.

So home it is and we’ll see how it goes. Our palliative home-care nurse is coming this afternoon to check in. I know I’ll feel more comfortable in my own bed. And you know I’ll keep you posted if my situation changes, or J. will if I can’t. Thanks for being tremendous supports to me during this difficult time.