The New Caregiving Journey - In Addition to the Older One


The New Caregiving Journey - In Addition to the Older One

signs-24351_640I am experiencing a new caregiving experience with my dad.

My dad is such a gentle, loving person. He takes life as it comes. He always wants to make his girls happy. I love my dad very much! My dad was the one who took me and my friends for several of my birthdays to the Hershey Chocolate Factory or the Zoo. We always had a great time. I liked my Dad's music from the 50's and we spent a lot of time listening to his records. My dad and mom divorced when I got married and I haven't had a relationship with my mom since I was pregnant with my oldest. When I had my sons, my dad would bring my "BabySister" (almost 16 years younger than me) to visit. I was so glad my dad would bring her regularly so we wouldn't grow up as total strangers.

My dad ended up living fairly close to us when my kids were school-age. Dad found a lady that he loved and they decided to live together. They loved to travel, taking some long trips and short ones. We were glad Dad was happy. About three years ago, Dad told us he was diagnosed with cancer, not a big deal. He went through treatments and didn't feel so bad, was still active but took shorter trips now because of the side effects. What we didn't know was that Dad was diagnosed with late stage cancer, he never told us or maybe didn't really understand what the doctor had said. We offered to go to his appointments with him but he said he was fine. Until...last month.

Dad had said he was taking a different drug for his cancer, it was super expensive and gave him horrible side effects. NurseySister went to the Oncologist appointment with him and heard the word tumors and masses for the first time. She was able to report to us a better picture of Dad's Cancer. The tumors were on his aorta, kidney, in the stomach, colon and cancer was detected in his lymph system. Dad didn't seem to really be worried except for the side effects of the meds. He fell several times! After an MRI, the doctor saw the broken vertebrae in his back and then another doctor "glued/cemented" them together and the pain went away. He became so frail during that time, losing strength now using a walker. He seemed to think that maybe, by just going to the hospital they could fix what was wrong. As NurseySister found at the most recent appointments, the oncologist said Dad qualified for hospice in all areas.

At that time, Dad and his wife wanted to wait a bit, think about it and see if the next MRI would show something different. So, NurseySister went to the final appointment where we all thought we would get a hospice referral (Dad was ready), the Oncologist said he wouldn't write it, he wanted to wait until after a colonoscopy!!! Now, all three of my sisters and I) became very angry when we digested the news from this visit. We were so ready for hospice and knew that a colonoscopy was a horrible, painful, possibly dangerous experience for our Dad. I left work early when I got NurseySister's text and called a cousin who is a nurse practitioner to ask what she thought of this situation. The bottom line was that the doctor refused to write the hospice referral and we needed that doctor to write the referral!!

As I prayed about this situation, I heard some wisdom from God. My dad became a Catholic about three years ago, the priest married Dad and his lady in the church (no marriage license). We have a Catholic hospice in town so I decided to go and ask them about services without a doctor referral. I spoke with the director of the hospice who was very interested in helping me! He said that this hospice was the only one who could provide services without the doctor referral and would take care of notifying the doctor that Dad was receiving hospice, I was given several of their handbooks and pamphlets because I was recognized as a caregiver not only to my Dad but was encouraging other family caregivers. I sat with my dad and his wife and explained hospice (they were afraid of it) and gave them the handbook. I then set an appointment with the hospice nurse for a visit and they agreed to hospice services. Dad feels much more comfortable and feels like he is being taken care of! He talks about how he might get better and then he won't need hospice. I just listen to him and nod. He is in a good place and is comfortable.

So, how am I doing? Well, let me tell you -- that hospice appointment was something I pushed for because my dad's wife (we'll call her Dora) has said emphatically, "I am NOT a caregiver." Dora has also told us that she doesn't cook, never really has nor is she able to do much cleaning. I don't fault her for telling the truth but when my sisters came to help her, she would tell them to go, she wasn't up to having help. Dora's daughter lives close by so when we asked about how to take this attitude, she said, "Just go in and do it." My sisters are not putting up with that attitude, I am the one who has the patience to sit and listen to what Dora is saying. I reinforce the ideas that things will need to be cleaned up and that we are here to help, not to be told to go away. I kept my mouth shut from reminding her that we don't feel welcome in her home, Dora whined at us two months ago about how she was Dad's sole caregiver, she has told us that we need to spend more time with our Dad (but she stole our time away with him for so many years) and I bit my tongue to not say that she is not going to be bossing us around any more!! My brain has been spinning trying to reconcile how someone can be like this. Dora was taken out of town for the day, twice in the last two weekends. The Sisters stayed with Dad since we feel he can't be left alone all day. I really enjoyed my morning time with him but found out how worried he is of Dora. His concerns brought up some real safety issues and red flags that have to be addressed. I passed along the info to the  Sisters, they had heard the same things. So now, we need to enable the Daughter of Dora to address it with her mom.

We've done a few things to keep communication going between the Sisters/Daughter of D, maybe you have thought of these or used them yourself! We have had lunch together to talk about our Dad and Dora, what are the concerns, appropriate support and encouragement for Daughter of D who is really alone (recently lost her sibling) and the one her Mom leans on. We have a Group Text Messages so that we all get the texts about what we observe, what we've done or what needs to be done at Dad & Dora's place. Daughter of D feels that her mom doesn't want my Dad to die in her house so we've assured her that Dad can be moved at any time to a Sister's home when Dora becomes uncomfortable. Having Daughter's input is so vital so that healthy decisions can be made.

So, I suppose I may lose my dad before my grandmother. That wasn't in my forefront of my thinking or timing of life events to watch for! I have been with folks through the Hospice and dying process, it can be a beautiful process, each one is different, this one for sure will be unique because it is my dad. I pray that I will keep my head in a good place so that I can continue to work, support, be supported and enjoy each day as it comes.

I have to let you know that caregiving has rubbed off on AH. He's set up a routine (driving 45 minutes one way) after work and on weekends to assist his brother (step-bro) who has kidney failure (dialysis every night at home/hospital) and diabetes. Brother has had both lower legs amputated this summer as well as a couple of his fingers. Brother is in the hospital now after the second leg amputation and AH made sure his caregiver is getting several days a week rest while Brother recuperates in the hospital then to rehab (hopefully), then goes to live with the caregiver and her husband. AH has found himself jumping in with the bedpan issues, hooking up dialysis, washing up and shaving his younger brother. I am so proud of AH and thankful that he is able to love on his brother during these difficult times. There are so many issues in these relationships that have a chance for resolution before there is not any time left! I am thankful, so thankful for God's wisdom and power in our lives!

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Thanks so much for sharing what you are going through, EGD. I'm praying for you and your family during this difficult time.


Hi EGD, it's been awhile since I've checked in and so I'm sorry to find this news about your dad. What an ordeal getting into Hospice... some doctors just baffle me. Your tenacity is admirable though such an emotional draining ordeal. We never know where are caregiving journeys are coming from next! Your dad is lucky to have you! Kudos to AH! Thinking of you.


Wow, your dad sounds like the ultimate trooper. Thank you for this touching post. I'm so glad to hear the other hospice worked out. I love it when I hear that services fall into place. Shame on that doctor. Sounds like he's trying to take advantage the situation. I hope the Dora situation gets resolved. People can be proud when it comes to people coming into their homes.