This blog was formerly dedicated in 2009 to my Dad who died of Alzheimer's in 2013. It's been three years now...and I find myself missing I am re-inventing my blog... because, after all, life is about moving through, and going forward...

Tuesday, January 10, 2012

Care Conference, Memories, a Fedora and Sardines...

I waited from 10:20am to noon for my  Care Conference call on Dad this morning... Mom finally called me at noon to tell me the nursing home ran late and ended up having to use a room with no phone to see Mom.  They sent their apologies to me with Mom...

Overall, Dad is happy and content.  So happy they asked if we wanted them to discontinue some of his "happy pills"...which I assume are the Zyprexia and the Lexopro.  The last Care Conference, Dad was taking an array of 22 medications, ointments, vitamins and minerals...and I was hoping to update my list.  I tried calling, but all the nurses are in a meeting and I was asked to call back after 3pm.

They also wanted to know if we still wanted them to perform CPR if his heart would give out...telling Mom often with patients of Dad's age, 91, the breast bone can break.

They always ask us these questions to stay on top of everything, but it is always difficult to think about.  We also have an order for a stomach tube to be used for a short time.  I do not see the point of stomach tubes... my mother in law unfortunately was taken to the dark depths at the very end of Alzheimer's when the patient forgets how to eat, swallow, open their eyes, speak, and becomes comatose. 

My husband and his children decided not to do the stomach tube.  At the time, I had not gone through hospice training, so I did not know it is more harmful to use the stomach tube because the body is shutting down and it is more humane to allow it to happen.  I thought she would starve to death and it would be torture, so I was against it...but out voted.  I was by her side the last two weeks of her life and I never saw her more peaceful.  They took her off all medication and she laid there with such a restful expression on her face...

I read her Bible verses and hummed along with the Pastor sang to her.  One day while he was praying over her and singing, she moved her head so it touched his forehead and stayed there for a few minutes forehead to forehead...both the Pastor and I wept.

One day I was just sitting and talking to her...telling her how much I loved her and what a good mother and grandmother she was, and she fluttered her eyes and mumbled she loved me too.... She never looked like she was in any pain at all.  Her face never flinched or grimaced...she looked very serene and peaceful. I felt so blessed to receive that last gift from her...

Toward the end, the last day, she kept her mouth open to was labored, but she still seemed peaceful.  The hospice nurse told us she was getting close and suggested we say our good byes...The Pastor suggested my husband tell her it was OK to let go...  He went in with her alone and said his good byes and shortly afterward, she let go and died.

I don't want my Dad to go to the end with Alzheimer's.  If his heart gives out, I want to let him go home to the Lord.  I know he is in a wonderful nursing home...but I will NEVER get used to visiting him there.  I HATE that he has to be there at all.  We do our best to see the positives, and the biggest blessing has been the personality change for the better in Dad.  Because he was demented for years, he refused often to take his medications and was very distrustful of doctors.  He was paranoid, suspicious and made life very difficult for himself and for Mom.

I can't help believing if he would have allowed the doctors to prescribe the dementia medications earlier, he could have stayed home longer and been much happier.  God knows, it would have made it so much better for Mom since she was his main caregiver.  He refused to believe he had dementia.  He forbid anyone to use the words dementia or Alzheimer's around him.  He preferred to think he had Parkinson's, like his younger sister...(which he did not have.)

Mom wants us all to have a family meeting and get together and discuss all of this.  We also need to decide on a mortuary and make final arrangements.  Both Mom and Dad plan on cremation, but since Dad is a Veteran, he can be buried in a national cemetery.  Each conference, Mom and I know we all have to discuss all of this, and send an email to everyone, but no one is just too difficult to think about...  We don't talk about it much, but I would venture to guess, everyone feels the way I do...

After the meeting, Mom went to visit Dad.  She had looked in on him when the conference was delayed, but he was absorbed with the Bible Mom did not disturb him.  The social director said Dad joins in on many more of the activities...seeking out others and being happily social...a blessing in deed, as when he was his "normal demented self" he was reserved, withdrawn and introverted.

The first thing she noticed was the gray fedora sitting, fashionably tilted on Dad's head.  Someone had given it to him and the nurses told Mom they have difficulty getting it off his head when they tuck him in at night... Dad thinks he looks pretty snazzy with it and will not part with it...

 picture from google images

Mom wheeled him into the lobby so they could visit before lunch.  Dad told her how happy he was and how nice it is there.  He was thrilled they gave him the fedora.

"Did you see the football game yesterday?" Mom asked...

"Oh yes, I have seen all Holl Doll's movies (Holl Doll is Dad's nick name for my sister Holly)...she is in practically every one I've seen..."

"I am amazed she has the time since she works at her job 40 hours a week...but I am sure she can much more money in movies..."

Mom tried again... "So what about the political debates...have you been following those?" (Dad used to be a staunch Republican...)

"Do I like sardines?  You know I love sardines...what's the matter with you?" 

"Oh yes," Mom said with a smirk, "how could I forget?"

(Dad has a hearing aid locked in the nurses station, but we cannot let him wear it without us, or it will get lost, like everything else does... Often we forget to get it, but looks like we may have to make more of an effort to get it during visits...)


Mari said...

Glad your conference went well. It's hard to review those decisions, but wise to be prepared. I'm so glad you decided against the tube feeding. I've never had a patient tolerate those well. I hope the family can make a decision on the CPR as well. I've made clear to my family how I feel about it, so that hopefully they won't have to think on it should that ever arise.

betty said...

Too cute with the fedora, Donna. Gosh, having been through two deaths so recently, and I wasn't involved in any of the decision making (rightfully so) it is painful and it is hard, but those decisions should be made earlier than later, like I know you are trying to do. Hubby's dad was military so he and MIL got to be buried in a military cemetery (before he passed, he chose Miramar that had just opened 6-7 months ago) but everything was handled with dignity, etc.

Hubby's parents hadn't done anything to plan funeral arrangements, etc and it wore hubby/brother out when MIL died. When FIL died a month later, it was "easier" because they just duplicated what they did for their mom.

My mom, years before she was close to death in any situation, made and prepaid for her funeral arrangements. She had a card she gave me with the contact information when she came to visit and said "you just call this number and tell them, they'll take care of everything." Sure enough when she died a few years later, my sister called the number and everything was taken care of, transporting her body back to where it would be buried, etc. All my sister had to do was order the spray of flowers for on top of the casket.

So it is soooo hard, I know, when they are living but it is sooooo hard when they pass, trust me on this. They had no idea what kind of song their parents would like sung so they picked something, etc.

And I won't even go into the advance directives issue. Both MIL and FIL had it but when the time came for FIL to act about something MIL specifically didn't want done (he was her power of attorney since she had dementia) he couldn't carry through with it and let her suffer and not go peacefully. A month later when the situation was that it was hopeless with him, BIL and hubby went through his advance directives and logically concluded he wouldn't want to live like he was at the time (basically every organ was failing) and they withdrew support and he passed 10 minutes later.

I know this is long, but share it with other family members. It is difficult to think about, but it will happen, as sad as it will be, and I think it is better to have some things in place rather than try to scramble around in that intense time of grief.