My significant other and I have been caring for my older sister for the past year at our home, after she first suffered a brain injury stemming from a hypoglycemic coma; then, during rehab at a facility, a broken hip and hip infection. She also had Type 1 diabetes and CHF. She had the worst luck in terms of diagnoses and care.
I have been managing caregivers and caring for her myself, coping with all of the trials and frustrations that comes with that. I was so tired, and obviously resented it at times. I was so sad that she had to go through all of this--she just wanted to get up and walk and go to her own home, but she couldn't. I loved her so much, and didn't want her to suffer. I wanted to make this easier. I wanted to FIX this. It was only when I was "fixing" things that I could manage. But, of course, I couldn't fix this, and whenever I let that sink in, I felt like I was going to fall apart.
She had been on hospice once before, for five months last year, before being discharged after improving. Then she was re-hospitalized and re-admitted to home hospice in December. She was discharged AGAIN from hospice last Monday, because she had been doing well. But the very same day, she tested positive for a UTI. We immediately started a broad spectrum antibiotic--she had had UTIs in the past, and this normally worked. But over the next few days, she began getting worse, not better.
Even then, I didn't see the signs. I did try to get hospice back on Friday, and asked her doctor to send the order. I then spent Easter weekend back-and-forthing between the doctor and the agency, with the doctor saying he sent and resent the order and the agency saying they hadn't received it. I begged them to just take a verbal order by phone, but still couldn't get services reinstated. On Monday, I asked the doctor to put in an order for urinalysis and an Rx for a different antibiotic, which I received Monday night.
This Monday, she seemed a bit better--woke up a little more, ate a little more. I started to feel relief that she might be finally turning the corner. It didn't look like the "rally" they often talk about. She was just a bit more awake and interactive. I wasn't preparing to lose her. I was preparing to start the new antibiotic and get her urine tested the very next day.
And then the next morning I woke up and her breathing was rattled. I called hospice again, begging to have them send an NP, even if she wasn't on their service. But in 30 minutes, she was gone. Hospice called back 90 minutes after that saying they had finally received the doctor's order.
I knew she did not have long, but I didn't know it was going to be that day. I didn't know the UTI was taking over so badly. The idea that she was dying of sepsis right before our eyes, and we didn't know how bad it was, is gutting me. And we should have--with my sister, a mildly elevated temperature has always been a sign of infection. Her temperature is usually in the 97s, and her temp with the UTI was 98.3. Her hands were warm, she wasn't making sense. How did she go from being discharged from hospice to dying--so quickly?
Now, the caregivers, who have been a part of life for nearly a year, are gone. The medical equipment has been picked up. The hum of the oxygen concentrator and mattress pump and the music my sister listened to all day are silent. SHE is gone, and her room is empty. All I can do is think of all the things I could have done differently, things I should have noticed sooner. When she was here and calling for me while I was trying to work, I felt frustrated. When we had the constant hum of the equipment in the background, I missed my quiet house from before. And now, all I want to hear is the equipment running and her calling for me from down the hall.
How do you deal with the emptiness after your loved one has passed? Especially if, like me, your loved one was one of your last blood relatives, and you're facing having to live without having any family left?
And on top of that was the uncertainty and guilt over whether I should have tried at all. On day three after she fell into the coma, they were discussing end-of-life and withdrawing food. I could not even comprehend giving her so little time to try to recover. I didn't listen and eventually she did wake up (about five weeks later), but her cognitive and physical abilities were much diminished. Her brain injury kept her from fully participating in therapy, but even so, her mobility and memory improved quite a bit over the next six months--until she fell while unattended at the skilled nursing facility and broke her hip. She never really recovered from that. From that point on, she lost all autonomy and most of her mobility. In hindsight, in trying to help her recover, I might have simply prolonged her suffering.
After the hip, I brought her home for care. I just wish I had brought her home sooner.
In addition to losing my sister, there are so many other losses involved. I was adopted and raised by my grandparents, who are both long gone. My brother (who was actually my biological uncle) died in 2018 from alcoholism, and now my sister (who was my biological aunt). I have one elderly relative left--my biological mother--and she has Parkinson's disease. I have a long-time significant other, but I never had children. That seemed like the best decision for me at the time, but now I realize I will soon be without any family at all. Plus, my sister was my last connection to my home town where I grew up--my "home base" is gone. The future looks so bleak, and I can't turn back time to fix anything.
I realize that it's very soon after my sister's death, so of course, all of these negative thoughts are spiraling through my head. As you all note, there is nothing else I can do but to try to get to a place of acceptance little by little, and to appreciate the time I have left with my biological mother. But I know that finding any peace with this outcome--and with the future I have ahead of me--will take a long, long time.
Thanks so much to all.
Weird that Hospice released her because CHF does not get better.
Sorry, I can't help you with the feelings u have. My Dad passed under Hospice care at 79. He felt he lived much longer than he should have with his heart problems. Mom, 89 who suffered from Dementia, again under hospice care. My sister at the age of 43 from breast cancer. In my family, we grieve and move on. Yes, my parents favorite hymns bring tears to my eyes. So do memories. TG my grandson was able to know my Dad, he now has his stories to tell.
Just know that you did enough for her. You brought her into ur home and cared for her. That may have given her more time. But she had a heart problem that was not curable without a transplant. I am with grandma...Take a few deep breaths. This loss is so fresh and new, allow yourself time to feel it.
You did nothing wrong while caring for your sister, and you should have no regrets. It was your sisters time to leave this world for the next and that is something none of us have any control over. When it's our time to go we're going to go no matter what. She knew that you loved her and did your very best. That is all any of us can do.
So don't waste your time with the should have could have and would haves as that will get you nowhere.
Instead when things have calmed down seek out a Grief Share group in your area, to help you through your time of grieving.
I know that after my husband died(who I cared for for many years)and he too was on oxygen, my house was very quiet, not only from the oxygen concentrator being gone, but from hospice coming in and out and his other aide that came in the morning, that for many months after I felt very adrift and lost. I wasn't sure what I was to do next.
But in time I figured out that is was my husband who died and not me and that I still had a lot of living to do. So I slowly but surely started living my life.
It's been over 2 1/2 years now since he died and I'm still figuring out things, but I can tell you that I am happy and that my joy has once again returned. And yours will too!
I am so sorry for the loss of your sister. You now have an angel watching over you from above, along with all the others that have gone on before her.
My God bless you and keep you in the days, weeks and months ahead.
I hope on some level you can experience the relief of the torment that had been formost in your Sister's life for so long a time. My own brother, to whom I was extremely close my entire life, was so wanting to "go" at the end of his life that in all truth I only could feel joy and relief for him, that his torture was over, that he never again had to be afraid, and that I never had to stand witness helpless to relieve his pain. I celebrated the love we had for one another, and grieved my own loss.
My wish for you is that you can celebrate your sister's life now as you move away from her long-dying process. Keep a journal and collage or decorate he; talk to her about the journey you made together. Know that she will always be with you. Know that you gave her a gift of care beyond compare.
Grief cannot be shoved away. It must be endured. Allow yourself to feel it. If you need help, consider seeing a Licensed Social Worker in private counseling practice to help you sort through your feelings and habitual patterns of thinking that aren't helpful.
The price of loving can be the loss when we are left without the loved one. But there are many waiting now to help you regain some of the joy of life you lost in your long-term caregiving. I wish you the best.