Exhausted – Alzheimer’s in the Family

On Monday I met with good friends Beverley and Joyce at Tin Roof Restaurant for lunch. It was great catching up. I got a 3 hour break from caregiving. Funny thing about getting these few breaks is the fact that in the back of your mind you worry about your loved one being ok. I’ll just call it “a break of sorts.”

I don’t know what I would do without my support system. I appreciate each and every one of you.

Mom and I went back to her house on Tuesday. So much going on this week. This traveling back and forth is very tiresome for both of us. It’s a necessity at this point, however.

Wednesday we went to Sampson Regional Hospital in Clinton for her Electrocardiogram. She asked me every few minutes “where are we going and what is going to happen there?” On this trip she was able to rollator back to the cardiac lab without the use of a wheelchair. Major improvement or just a better day. We know it is the later.

Afterwards we went to her favorite restaurant and she ate pretty well. She was exhausted when we got home.

Her GP’s office called at 9AM on Thursday with the results. Mom’s A-Fib is caused by valvular incompetence. All that means is that all 4 of the valves in her heart are regurgitating. It simply means that when her heart beats and the blood goes out of the chambers, there is a back flow into the chambers. The heart and body isn’t getting sufficient blood. It’s also called leaking valves. All 4 of them. The aortic valve is the worst.

The GP sent the results electronically to the cardiologist in hopes of moving her appointment up from 10/21. So far no luck. Mom is saying that she doesn’t want any surgery and I’m in agreement. Anesthesia may cause Alzheimer’s patients to become delusional and often they do not get better. We’ll wait to see what the cardiologist says but I will have to be convinced about her quality of life. We’ll see.

I spent the remainder of the day making phone calls and researching valvular incompetence. So much information but none on valvular incompetence in all 4 valves and nothing on any patients with dementia. Not even from Mayo Clinic or John Hopkins. Some studies indicated that patients over 80 (without dementia) had a 17.5% mortality rate at 30 days and 20% at 3 years. There was a 1 year recovery period. That said, that was aortic valve replacement only in patients without dementia.

I would like to add that there is an ongoing issue about xrelto. Mom bled profusely on the 20 MG dose and I took her off that and back on the 325 MG aspirin. She is also on Plavix. Her doctor wanted her put back on a lower dose of of xrelto anyway. After much passionate discussion, mom started on the lower dose yesterday. I’m conflicted about it but the doctor insisted. This dose is 15 MG so not much difference. If she bleeds this time, xrelto is done and maybe her current physicians.

Thursday night we went to bed early as I was extremely exhausted. I awoke around 1:30AM because I heard mom’s rollator. I thought maybe she was going to the bathroom but no. I got up and mom was in the living room and had all the lights on. She said that she saw men with flashlights trying to break in to the beauty shop. All the blinds were closed and there was no way that she could have seen that. There was no one outside. Maybe she was dreaming. I calmed her and got her back into bed and she went to sleep straight away. I did not, however, until almost time to get up. Exhaustion.

Friday I had an appointment at an assisted living facility. Thanks to Teresa for helping me navigate that. There isn’t much help out there for families in this situation. The meeting went well and mom is now on a waiting list to get in. It’s a nice place with a 4 star rating and they were able to answer all two pages of my questions satisfactorily. I was impressed by the staff and the facility. I spoke to some of the residents also. It was a positive experience. Now we wait.

Glenda and Eugene came by and brought a great lunch. Mom ate more than she has in a long time. Glenda is a good cook. We enjoyed their visit so much. They have been very supportive in our journey and for that I am thankful.

Today, Saturday, I slept until 9 AM and mom slept until 10. We sorely needed the rest. The journey is exhausting.

More later.