Frustrations of caregiving: Feeling neglected and obligated

My spouse has metastatic renal cell carcinoma with mets to the sternum and lower spine causing the most pain now. She had a small stroke in early January from a clot that formed because of her cancer med and being off blood thinner for a few days for a vertebroplasty. Realizing from Palliative Care providers expertise that she isn't going to get better or even stronger for a short term, we have become Hospice patients as of one week ago. My spouse was determined to get to Arizona, where we usually winter and have a big support group, as opposed to our summer residence which we just moved to the end of November.

She survived the trip, has seen friends, has been in the pool once, has seen midwest friends who are also here for a short while, and now she seems to be letting go. I'm tired, but relieved to be among so many friends who can help.

Don't know how this note will help anyone, but I haven't logged on for a long, long time and just felt the urge to write something. Thanks for listening.

I am so happy for you and your wife to be able to get to Arizona. When my dad had stage 4 liver cancer with metastases he also decided he needed one last visit to his Winter Texan home. He entered hospice there and my sister and I were able to be with Mom and Dad at the very end. The support was far more than she would have had at home in the dead of winter.
We are now Winter Texans ourselves, and my husband and I are honored to support friends, our "family of choice", as we all face the trials of aging and end of life.
It is a true blessing to be among many who understand what we face, and be able to grieve and celebrate life together. We just shared dinner with a woman who lost her husband 10 years ago this month, she has become one of our dearest friends, and a model of how to face loss and move forward.
Please accept all of the love and support your friends offer in this difficult time. Your life and theirs will be richer for it. My thoughts and prayers are with you.
Sue

Hang in there - as the saying goes, the days are long, but the months/years go fast. Though it doesn’t sound like you are together as a couple, you have chosen to take care of him which is such an honorable thing to do. Do you communicate well enough that you could talk to him about it? I’m sorry you’re going through this, but as someone said, let him know you need even a 20 min break, eat a quick meal or go for a little walk to get some fresh air. Rest when he rests and when and if you can, maybe try to find something you used to enjoy doing together…. Possibly watch a tv series, feed wildlife, etc. Caregiving is not easy and it sounds like your situation is difficult, but you can do it! Keep going, be good to yourself, give yourself grace and know that through all of the tough times you are helping a human being who does not want to be in that situation either. Caregivers have the biggest hearts. Hang in there and we are here for you if you need to vent. 🙏🏼 Sending prayers to you both.

@deek15redpeppers There is a grace and unspoken/unseen energy when you move in to the stage you and your spouse are at. A thankfulness for all your support group and friends, as they buoy you both up now. I know you are tired, and overwhelmed. Let your friends there know how important they are to you both, and allow them to take over when you yourself need a bit of a break.

I wish for you, a peacefulness that comes with knowing your spouse has accomplished what she needs and wants now. A comfort knowing you have done what you can, and even in the grief of a life turned upside down, your support team of friends are standing right there with you. Please feel free to PM me when you feel the want/need.
Ginger

Have you looked into getting some in home care for him, even if it's just someone to sit with him for a couple of hours while you go out and recharge? I think all of us who are or have been caregivers can sympathize as at some point I think we all hit a wall with how much more we can take and it must be especially hard when the love you felt is no longer there.

We have been very lucky with my husbands Dr's and I have occasionally spoken to the nurse or emailed them prior to an appointment asking the Dr to reiterate something as he listens to them much more than he does to me, maybe they could impress upon him the importance of his medications and the results of not being compliant.

My father in-law had many health issues (similar to my husband) and his wife was one day complaining to him about all she had to do for him and he asked if they could switch places, that has always stuck with me. I always try to remember that I am healthy and can do this and my husband has no option, the lack of control they have over really anything is so diminished they push where they can.

I will keep you in my thoughts and prayers

Thanks to both of you. The line about the patient and caregiver changing places really hit home with me. I will remember that as I care for her.
Three of our college friends are visiting us this weekend and we're having a special time reminiscing over 52 years of friendship. What a gift to all of us, most especially my ill spouse.

@deekredpeppers That must be both a combination of laughter, and bittersweet remembrances! So many years of friendship and support right there with you. Yes, indeed, a true gift to you all! Take pictures, recall fondly, write it all down in your journal, perhaps sing silly songs all together into a recording device, to be replayed later for you and your spouse when the rocky and tough times come up [you know they will, sooner or later].
Ginger

Thanks, Ginger. We did take pictures, even though Jenny didn't want to be in them. What a good time we had - and you are right - bittersweet. Tears were shed, but laughter took center stage.

Today there were 5 friends from our RV park in the living room when our Hospice social worker arrived. She was overjoyed to see what support we have here. I have a friend taking the night watch tonight, so I will take my sleeping pill and hopefully get a good night's rest. Jenny says she will sleep all night so our friend will think I'm making mountains out of molehills! We'll see how it goes...

Don't we just gain extended families in our RV parks? My uncle and Dad both chose to have their hospice in their park, surrounded by warm air and friends in the same stage of life, who understood. After my Dad passed peacefully, my Mom was surrounded by her friends and 2 sisters, while my sister and I handled all the details of contacting family, airlines, and the funeral home, clearing away the hospital bed and oxygen, accepting food offerings, etc.
When my dear friend and neighbor here had the same experience a few years ago, she was wrapped in the care of this community, and her kids could see that she should remain here instead of alone out in the country in Nebraska, and she is still here.
Tomorrow, we shall have a delayed celebration of my husband's best friend, who was our park ambassador, and passed away at home in August- my friend made the choice to celebrate here, where they spent the past 8 winters.

I am so happy to hear that you and your wife are able to enjoy the love and support of your "intentional family" in this difficult time. Enjoy your well deserved rest tonight!

You will be in my thoughts.
Sue

Sue,
Thanks for sharing. Yes, our chosen families can give us much support, especially when blood relations are few in number and are long distances apart. One of our friends stayed the night so I could get some sleep last night. What a gift she gave me!
Now I'm going to the bank and shoe store - the first time I've been out of our park in 2 weeks!
Thanks again. Dee