Here I am 65 taking care of my 86-year-old mother and my disabled son, discussing her end of life transition. Believe me, I didn’t ask for this nor do I want to deal with it, it makes me uncomfortable. See, my brother and sister are selfish individuals and have taken advantage of my mom and dad money-wise. They aren’t the only ones to blame, though. My father was an enabler with a big heart and I am paying for it. I wanted to semi-retire this year and do some traveling, but this has really put a kink in those plans. Now all I think about is how long will my mom live? I don’t want to have these negative emotions and it started bothering me that I felt that way. After joining a group of caregivers, this seems to be a common feeling among burned out caregivers. The common theme is: ” How is this fair?” I’m sure there are many LA65 readers who may be dealing with the same issues I am now and maybe you will relate.
When my dad passed away, my parents were married 65 years. In fact, they were shy of their 66th by two weeks. They were more than husband and wife, they were best friends.
A Little Background
I was closer to my father than my mother because dad and I hung out together. We’d go to church and then breakfast, and when he went hunting with his buddy, I would go along with his buddy’s daughter. When my appendix burst and I was in the hospital for a month, it was my dad’s face I saw every time I woke up. Both my parents were in an Assisted Living Facility in Florida at the time of his death. If you haven’t checked them out yet, it’s like being on a cruise ship without the water. They had sold their home, their car was old and in need of repair and my mom couldn’t afford the rent, it was in excess of $4,000 a month. They had gone through their life insurance lending my sister money for her troubles. This was a bone of contention between my father and myself.
Dad’s death wasn’t a complete surprise, it was the way he died. Dad did a wonderful job of sheltering my mom from the outside world so she’s not equipped to live on her own and has become my shadow. When I get up, she gets up. When I go to bed, she goes to bed. Face it, I have a shadow so I’ve lost my alone time and privacy. My day is filled with “I need….” It’s aggravating, she can’t hear well and refuses to get a hearing aid. Most of the time I feel like a maid and personal assistant. I don’t think she realizes she’s doing it and we’ve certainly had our arguments about this. She has Alzheimer’s and Lewy Body Dementia (a fun disease I never knew about). And I work full-time.
I had Power of Attorney and mom and I was able to carry out his wishes. The last time he opened his eyes, he was trying to tell me something and he cried. I wanted so bad to know what it was, but he couldn’t talk. His internal organs were failing. To this day his face haunts me. I wish I could have spoken to him if only to say goodbye.
There is no easy way to start a conversation about dying, except:
“Mom, I’ve been thinking and I want to know what are your wishes when you die.”
After my experience with dad, I wanted to make sure that I had everything covered. I don’t think I could go through that again. I carry a lot of guilt as it is, I don’t need to add to it.
The first thing she said was:
“I don’t want to be resuscitated. Just let me go, it’s my time.”
I think after seeing what my dad went through it scared her. That’s fine, but not everybody agrees. Let’s say I have to call an ambulance, well, paramedics are bound by law to resuscitate even if there is a “DO NOT RESUSCITATE” order. What?? So what do I do, not call the ambulance? If I do and she dies in the ambulance, they bring her back possibly break her ribs and to help her breathe put in a vent, then I’ve got lots of red tape. She’s 86! I’m okay with it, let her go be with dad. We are all going to die someday, it’s part of living.
SUGGESTION: If your parent(s) want a DNR, contact an attorney and check the state statutes and ambulance services. In my opinion, the medical community is driven by dollars, not by compassion nor respect for the wishes of its patients. In my dad’s case, he was on a vent, his brain was oxygen deprived for 10 minutes and his organs were failing, yet they wanted to keep him alive and perform a ton of tests and then put in a permanent vent to “see” if he would recover. Be prepared to argue with staff and doctors.
“Mom, how do you want to be buried? Do you want a funeral? Do you want to be cremated?”
“Well, I want to be cremated and be with dad.”
Okay. We cremated my dad and he now resides in my mother’s bedroom here in Michigan. She talks to him every evening and tells him how her day went giving him a rundown of events.
Next trip? The funeral home. What an exhausting experience that was! We were there 3 hours! If you have ever seen the movie “Six Feet Under”, I felt like we were in a scene from the movie. Since my dad was a Korean War Vet we picked out a spot at the local VA cemetery and dad would have a VA funeral with military honors. (We weren’t able to do this in Florida, things just happened so fast). We chose a double urn inscribed with the date of marriage and a poem, they would be together in the same urn, side by side the way they were in life. And while we were there, I made my arrangements as well. Why not? When I told my kids I got a “thank you, momma”. Funeral arrangements…done!
After the Talk
Now that we’ve gotten the difficult arrangements out-of-the-way, mom seems calm. You see the “relief” on her face when she talks about the end. I’ve grown used to it now talking about her passing. When she has a thought about dying and wonders if dad will be there, I can say yes, he’s waiting. Her eyes light up at the thought of seeing him again. She says she’s ready to go, she feels that there is nothing left for her to do.
Me, I think there is a point in life that medical advancements are more for hospitals and doctors to make money. They don’t help the family, they prolong the inevitable. I can see my mom’s point of view here. I think I would feel the same, 86 years is a long time to live, by then you have to be tired. There are many burned out and tired caregivers in my shoes who have siblings that won’t lift a finger to help. What bothers me more is that mom feels abandoned and alone. But as it’s been said “Karma….” will bite you, and I believe it to be true.
If you are in my shoes and have the same feelings, it is normal. They say take care of yourself first, but it’s hard to do when you’ve got someone to take care of. You can’t help but be resentful but that does not mean you should ignore your own health. After all, we are all human and nobody is perfect.