I Took Off My Hat

Posted by frances007 @frances007, Dec 11, 2023

The dreadful thing about getting older is you cry at the drop of a hat.
-Eric Idle/Comedian
For those of you who have read my posts and provided me with an abundance of encouragement and support, I thank you.
I have hung up my "caregiver's" hat. This was not done without great thought, and perhaps prayer. It was only until I was at the doctor's last week and saw that my blood pressure which is always very low, was now quite high. Subsequently, I had chest pain during the weekend, the result of caring for my best friend, CJ, who I have known for eleven years, and who I have seen nearly every evening for the past 10 years. For the past year I have been her primary caregiver, her guard and gate keeper. I have watched her steadily decline, have listened to her tell me she no longer knew how long we had been friends, or that we had a brief relationship many years ago. I began "pre-grieving" at that point, because naturally our friendship had changed to one where I was now the parent, even though she is 20 years older than I. I have picked her up off the floor when she has fallen, I have cleaned up everything under the sun, plus more. However, after seeing my blood pressure rise and having chest pain for the first time in my life, I realized that I can no longer continue to care for this person who has essentially become a "shell." With my own health in a steady decline, there are many things I want to do for myself, knowing full well that oftentimes caregivers die before those they care for. I am not the epitome of a healthy poster child, and there is no cure for my disease. While taking care of CJ has given me "purpose" since I became ill, and has given me something to look forward to everyday because she is essentially the only person left in my community who will acknowledge me without judgment, or asking me why I am so thin, I realize that I need to spend whatever time I have left trying to find another way to look after myself for a change.
Last year a therapist told me that it was okay to be "selfish" as opposed to "selfless", which is pretty much how I have lived most of my life. Quite possibly, my crazy neighbor was correct when she told me last year that I was "too kind." In any event, my kindness and sense of humanity is part of my personality, and this will not be lost when I leave CJ. However, I believe it is important that I be a little bit kinder to myself, even if leaving CJ brings me to a level of grief not known before. She will be fine.
I called her sister yesterday in Idaho and explained all of this, and she was very understanding, and planned to call the POA to find out what, if any plans there are for CJ now that I am stepping away. I wished her good luck with that, because as far as I am concerned, the POA, who has more money than God, and sits high up on her plinth, has so far remained elusive. I am no longer willing to be a pawn in this situation because if I were to continue, my health would fail much faster, and my resentment would grow as tall as a mighty oak tree. I love my friend too much to become resentful.
I will spend the holidays with her and slowly disappear from her life. Those who are stealing her money and belongings are out of my control. I have tried to move heaven and earth to protect my friend from foe, without success. I can no longer subject myself to the stress of this alone, and that is probably the saddest part of my decision. Knowing that she will be taken advantage of, will be left to fend for herself, until she falls and there is no one there to lift her back up.
I am sorry if anyone reading this is astonishingly angry with me for making this decision, but for me, it is the only decision. While my psychologist suggested taking care of her "part time" by going over to CJ's apartment, preparing dinner and doing everything else, and then leaving, I do not see this as a solution because knowing myself, I would be more inclined to stay and remain watchful, anxious and worried about whether or not someone else would come over and take my place. I have let go of this. Of course, this was not an easy decision to make, and if there is anyone out there who thinks that what I am doing is "shocking" , I am sorry. I want to do many more things before I meet my own demise, and the longer I take care of CJ, the less time I have to do whatever it is I want to do with the rest of my life. You have no idea how much she means to me.

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Tough decision, but necessary. And correct.

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Dear Frances, Hats off to you for realizing when a burden has become to large. You have blessed your friend with many years of friendship and several years of gracious care. It is time for her family to step in and make sure she gets what she needs for her remaining days.
I believe your gentle exit over the holidays will be a good thing for both of you, giving you a bit of extra grieving time.
Hugs!
Sue

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Hello Frances,
I feel a lot of empathy for you and your friend that you love. She looks so frail in her picture and I can see why she needs help. However, with your illness, I understand why you have to use your time to help yourself. I think that even if she forgets you completely, she will still have love for you as her caregiver. She loves you because of all you have done for her, whether she knows who you are or not.
It might be easier for you to accept the change if you would visit her once a week, making the time you spend with her one or two hours. If I were you, I would set a timer and leave when it goes off, and at the same time, the alarm will remind you that you need to take care of yourself. Of course, this is only a suggestion, and again I do agree with your decision to leave her.
I just wonder if you left the door open just a little, it might be easier to adapt to the change you will be going through. At any rate, my heart goes out to you and I would like to hear from you about the change and taking care of yourself.
God’s blessings to you.

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in reply to @janet7 Thank you so much for your kind words. I really appreciate the suggestions, as I cannot see myself cutting off all contact with my friend. Just the idea of doing so makes me sad. Naturally I am going to worry about her eating, as she will not eat dinner alone. I have never betrayed any of my friends, and last night I kept thinking, " I am betraying my best friend." She relies upon me so much, and has been so kind and generous to me in the past. I think your idea of visiting her and using a "timer" would be helpful. I plan to spend the night with her on Christmas Eve, as she always asks me if I am going to stay the night. It is heartbreaking when I say, "not tonight" because I can tell by the look on her face that she really does want me to stay.
I told her last night I am going to go into my "Martha Stewart" mode and totally deep clean her apartment as a gift. Her current "housekeeper" only does surface crap once a month; suffice to say, CJ really needs her apartment revamped. She spilled a bottle of Ensure on herself and her chair over a month ago, and while I left a note for the "housekeeper" to please switch out the chair, she did not. So later I will get this done and try to talk CJ in allowing me to discard of this filthy chair she has continued to sit on for two months, As you can imagine not only how the chair looks and feels, but it also smells bad. I will do as much as possible making it much easier for the "housekeeper." Maybe I could do this once per month. You have some great ideas, and I am so grateful because last night and this morning all I kept thinking about was "betrayal." I know what that feels like, and while my friend will not even stop to consider this, I am still having a lot of guilt about my decision.
Enjoy your holidays

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I just read this in the Washington Post, which I subscribe to, and thought I would share the link. I hope many are able to read the column. Ms. Hax does a great job in answering questions we all seem to be dealing with one day or another, I found this one to be especially fitting on a personal level.

https://www.washingtonpost.com/advice/2023/12/13/carolyn-hax-sick-wife-friends-disappear/
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@frances007

I just read this in the Washington Post, which I subscribe to, and thought I would share the link. I hope many are able to read the column. Ms. Hax does a great job in answering questions we all seem to be dealing with one day or another, I found this one to be especially fitting on a personal level.

https://www.washingtonpost.com/advice/2023/12/13/carolyn-hax-sick-wife-friends-disappear/

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Thanks for this post, @frances007 When my wife was diagnosed with her brain cancer a friend of our daughter said this: "You will be shocked by how many friends abandon you but even more shocked by who the one or two who stick by you are."

This was absolutely true in our case. One friend of my wife's from elementary school and one past work colleague of mine stayed friends and stuck with us although they lived hundreds of miles away. Others, many of whom had been close friends we'd known for more than 30 years ghosted on us -- and my wife's "best friend" has yet to even acknowledge that my wife has passed away.

It was a very important life lesson for me!

Strength, Courage, & Peace

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in reply to @IndianaScott Today I saw my PCP and discussed with him this new advance healthcare directive I am completing, which contains my sister as my "agent." I told him that I really didn't trust her to do the right thing, nor would I think that she would make the 30 minute drive to the hospital "just in case" the plug has to be pulled. I wanted to know if I could leave it blank, and just have the attending doctor follow my instructions. No, He wondered if I had any friends who I trusted, and I said that I used to, but since I got sick, most of them have disappeared. This is true. I was sitting there going through my head trying to think of a friend I could trust, and my mind was blank. So, I guess the sister has to remain as my agent. I have accepted that my former "friends" have fled, but sometimes it is a bit heartbreaking to know that the only reason these people have essentially abandoned me is because I have a rare disease. The women literally speed up on their walks when they see me approaching.
I wrote out a card this evening to a former neighbor hoping to reconnect. Sometimes it doesn't work out. In fact, the last time I spoke to someone I had reconnected with and who stopped contacting me, she accused me of "overthinking" the situation when I called her on it. I am waiting for one of her useless holiday cards with photos of people I don't even know, and which has nothing written on the back. I will write, "refused" and send it back.

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@frances007

in reply to @IndianaScott Today I saw my PCP and discussed with him this new advance healthcare directive I am completing, which contains my sister as my "agent." I told him that I really didn't trust her to do the right thing, nor would I think that she would make the 30 minute drive to the hospital "just in case" the plug has to be pulled. I wanted to know if I could leave it blank, and just have the attending doctor follow my instructions. No, He wondered if I had any friends who I trusted, and I said that I used to, but since I got sick, most of them have disappeared. This is true. I was sitting there going through my head trying to think of a friend I could trust, and my mind was blank. So, I guess the sister has to remain as my agent. I have accepted that my former "friends" have fled, but sometimes it is a bit heartbreaking to know that the only reason these people have essentially abandoned me is because I have a rare disease. The women literally speed up on their walks when they see me approaching.
I wrote out a card this evening to a former neighbor hoping to reconnect. Sometimes it doesn't work out. In fact, the last time I spoke to someone I had reconnected with and who stopped contacting me, she accused me of "overthinking" the situation when I called her on it. I am waiting for one of her useless holiday cards with photos of people I don't even know, and which has nothing written on the back. I will write, "refused" and send it back.

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Hi, @frances007 I agree this is another of the tough rows to hoe during a tough time in life.

As to your advance directives, I know of folks who identified a trusted professional/advisor who agreed to function in this role. In my case, I have our daughter and our long-time family attorney who have agreed to this role. Personally, I believe the decisions that need to be made are too crucial to leave to someone you don't trust fully. The unexpected can happen. Years back my wife and I were at a little league baseball game with our young son when she got a call that her aunt had been in a bike/car accident and her daughters were asking for my wife to join them at the hospital. Turns out, while the aunt's daughters had all the POAs they needed, they simply couldn't tell the staff to turn off the machines so they asked my wife to be the one to do it.

As far as communicating with friends of old, I have taken the path of not setting any expectations nor trying to change anything if they don't bring it up. Yes, I wish much of their communications were more detailed and personal, however, I value getting anything from them at this time of year. I also realize I never know what might be going on in their lives that they are keeping personal. An example is a long-time high school chum of mine who would write me every year and then suddenly quit. I'd write him pleading for him to get back in touch. It wasn't until his wife dropped me a line telling me he'd had a stroke and could no longer correspond and my asking him to write made him feel badly. So now my letters are just newsy and light.

Certainly no easy solutions to human interactions, right? 🙂

Strength, Courage, & Peace

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@frances007

in reply to @IndianaScott Today I saw my PCP and discussed with him this new advance healthcare directive I am completing, which contains my sister as my "agent." I told him that I really didn't trust her to do the right thing, nor would I think that she would make the 30 minute drive to the hospital "just in case" the plug has to be pulled. I wanted to know if I could leave it blank, and just have the attending doctor follow my instructions. No, He wondered if I had any friends who I trusted, and I said that I used to, but since I got sick, most of them have disappeared. This is true. I was sitting there going through my head trying to think of a friend I could trust, and my mind was blank. So, I guess the sister has to remain as my agent. I have accepted that my former "friends" have fled, but sometimes it is a bit heartbreaking to know that the only reason these people have essentially abandoned me is because I have a rare disease. The women literally speed up on their walks when they see me approaching.
I wrote out a card this evening to a former neighbor hoping to reconnect. Sometimes it doesn't work out. In fact, the last time I spoke to someone I had reconnected with and who stopped contacting me, she accused me of "overthinking" the situation when I called her on it. I am waiting for one of her useless holiday cards with photos of people I don't even know, and which has nothing written on the back. I will write, "refused" and send it back.

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Frances, I get it.

After my stroke, I spent four weeks in two different hospitals, hundreds of miles from home. I was scared, isolated, miserably uncomfortable...and did I mention scared?

I couldn't talk very well, but I sent emails and texts to everyone on my contact list. Most never responded at all. Of those who did, most drifted off after one or two responses.

In some ways, that hurt more than the stroke. People I had known for years, even decades, suddenly didn't know me anymore.

Those few who've stayed in touch have been great, but sadly, none are physically close to me.

But I think there are always answers. Keep looking. After nearly five years, it's what I do.

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in reply to @scottrl Yes, that is all we can do, keep looking. My best friend lives in Oregon, and happily we talk frequently. I have known her 40 years, since college.
Here's a good one. I was in a sorority while I was in college, so when many around me began shunning me, I thought, "well, maybe there is an alumni group for my sorority in my area, afterall, they were my "sisters" and out of anyone, they might like to be in touch with me." So I sent an email to the national office asking to be connected to the local group, and I received a response that said I would be contacted soon. This was in September. No contact, EXCEPT now I am receiving notifications from the national office asking for money, donations etc.
It is all I can do not to send them an email telling them how I really feel about "sisterhood" and all that BS.

I sent my sister an email this morning asking her (again) for her daughter's number just "in case." She sent me the number with a message, "do not call her unless it is an emergency." I told her I would never call her as I don't even know her, other than that she left their dog in the car this past summer and the results were "official." I can't even fully explain how upset I was about that one, and had she not been a relative, I would have called the sheriff.

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