Getting my dad all set

MerriMom

I got my dad to all the doctors appointments and got him hearing aids. He has a colonoscopy scheduled for Monday morning. Tonight I have to hide all my dad’s usual food so that he can only eat the food that’s designed for his colonoscopy prep. I have to follow the schedule for giving him all the right foods at the right times. It’s pretty much giving him something to eat, a tablet and a drink every 1-2 hours all day tomorrow. I also have to give him the last step 6 hours before his procedure. That’s giving him the last step at 5:00 Monday morning. He has the colonoscopy on Monday at 11am. Then he gets his last 8 teeth extracted on the 28th. Then he doesn’t have to go to another appointment until he gets his reading glasses in September. Whew!

M1

MerriMom I'm going to sound like Debbie Downer here, but have you ever had a colonoscopy?  The prep is not easy, and be prepared that it may not go as planned.  I have thrown up several times when prepping, and the cleanout may be difficult.   He may well not be able to understand or cooperate, and I would just caution you to be prepared for that.  I would frankly think twice about why you're doing this.  If it's a screening procedure, are you sure it's worth it?  My partner is stage 5 and there is absolutely no way I would try to put her through a colonoscopy, or even mammography at this point in her disease.  You may have reasons for proceeding, but I would think twice?

MerriMom

Debby Downer, My dad had a colonoscopy a year ago and had 13 polyps removed. He had one that was too big to removed. Some were attached to his organs. He did a ColoGuard  test that was abnormal so he got the colonoscopy. His doctor said that if everything goes well this time, he won’t ever need to get another one. He’s in the early to mid stage of dementia. It’s been almost 2 years since we noticed his symptoms and he moved in with us. Thank you for your concern.

harshedbuzz

Merrimom-

I am with M1 on this.

I would not consent to a routine screening colonoscopy for a person whose dementia has progressed to a point where they cannot live independently. I don't see the point of testing for conditions I would not elect to treat. Given that your dad already has a terminal diagnosis (dementia) would you subject him to rigorous treatment for colon cancer if found? 

With my own dad, I was very proactive around quality of life and comfort care- he saw the best folks available for glasses, hearing aids and to manage his breathing (COPD) but I chose not to aggressively treat his gallbladder issues or monitor his macular degeneration at a certain point. 

FTR, I had something of an argument with my own mom last week. She does not have dementia. She is medically complex and does not drive leaving me to devote quite a bit of my life ferrying her to her many doctors appointments-she sees 14 doctors routinely each year plus random visits to OT, DME, PT, etc- the woman has 2 ophthalmologists- one for each eye (retinal specialist and neuro for her optic nerve).

Last week she was making noises about a bone density scan and I said no. I never say no and if she feels she wants to drive to the eye hospital and see the top guy instead of seeing one of his colleagues a mile from her home, I will make that happen. I even signed off on the removal of a lipoma on her scalp which meant a trip to the hospital in the midst of a pandemic because she is embarrassed by it when she gets her hair cut. 

She already has an osteoporosis diagnosis, she already takes Vit D and calcium, she already eats a heathy diet, she already gets regular weight-bearing exercises and she refuses- under any circumstances- to reconsider the use of a prescription for her osteo. There really is no valid reason for her to have that appointment. She wishes to continue mammography even though at 84 her doctors do not feel it necessary; her PCP has thus far refused to write her orders for a colonoscopy. 

HB

MerriMom

My dad hasn’t done any health care on his own. If we hadn’t gotten his colonoscopy when we did, he would have died within a few months. My dad is just in the early to mid stages of dementia and is only 72 years old. He is the only grandparent my girls have left. They are only 11 and 6 years old. I just lost my last grandparent and I’m almost 39, and my husband just lost his grandparent and he’s 41. I’m going to keep my dad around and living his best quality of life for as long as possible.

Quilting brings calm

Merri-

I am surprised your dad is allowed to eat anything tomorrow. My colonoscopy preps required light eating  two days before and only jello, Gatorade and clear liquids the day before.  The prep will need you to station him very near to the bathroom.  Because once it kicks in, he won’t be able to hold the bowel movement for more than a few feet especially if he walks slow. 

I have to repeat my colonoscopy 3 years after my last one because they found two polyps, after not finding any 10 years before.   I know people required to do it yearly due to having several polyps repeatedly.  This may not be the last one for him unless he or his medical proxy decide to not have any more done. The answer to that depends on whether he(you) accept the fact that no colonoscopy means polyps will definitely return and grow and become cancerous. 

MerriMom

This whole food box this is new since the last time he had a colonoscopy. It’s designed to make the prep easier than just drinking the whole jug and waiting. His bedroom is right next to the bathroom. I don’t know if his doctor thinks that this will be enough because of how bad it was last time, but I will do what the doctor says to do. Thank you for the advice.

mommyandme (m&m)

I don’t think early to mid stage is too late for some preventative and diagnostic procedures. I believe I would have done what you’re doing.  I also didn’t have the foresight or wisdom with this disease at that time, didn’t know what really was to come.  Even if I did, I still don’t think I’d want to hasten the death sentence at the early stages for my ma.  If/when I have dementia…different plan for sure.  

Stages 5, 6, probably not and definitely not now that my mom is early stage 7.  No procedures except for immediate pain control, like pulling teeth.   In fact, hate to be so ugly, but a quick cancer death would be optimal to this life draining monster.  It just gets so much worse for everyone.  Even the great grandchildren have it bad and they’re all under 7.  They can’t enjoy her at all and she definitely doesn’t enjoy them.   Hate that their memories of their great grandma could be negative. 

Hope his tests go well with a positive prognosis. Thanks for sharing and please post an update.

ButterflyWings

MerriMom- It sounds like you have gotten so much accomplished for your dad. I hope you get some rest soon. I’m so sorry for all the loss you have described as well. 

It is understandable that you want to keep your dad with you and your family as long as possible. I am with M1 and HarshedBuzz that the colonoscopy and prep itself are a lot to put our LOs through when faced with these tough decisions around balancing quality of life with standard invasive procedures that make absolute sense for non-terminal patients. I told DH’s PCP no to elective procedures, by mid-stage, mid-70s (age). At that point we would not operate even if a colonoscopy revealed something troublesome. I’m not rushing my DH out the door but not prolonging this terrible struggle for him either. He has lived a good life and would not want extraordinary measures to keep him on the dementia path. 

The anesthesia impact also is a real concern, with a risk of escalating dementia progression. Did your dad ever express any living will instructions or other wishes about medical decisions when he was more lucid? We all sure do have lots to think about with this terrible journey.