Extreme Trust

Over the last few weeks I have been posting about End of Life topics.

1) I dealt with not sending Gregory to ER when his fever would not break even though the doctor though I should.

2) I thought about under what conditions I would use ER.

3) I revisited Gregory and my previous conversations about "no heroics, do not resuscitate, no inadvertent prolonging of life."

4) I made the decision to apply for Hospice (which while dealing with end of life does not mean that death is just around the corner.)

I am aware that all of these dealings are easy for me on an INTELLECTUAL level, but then the EMOTIONAL level creeps in and I cry, and sob, and want to get hysterical and scream and rend and smash.

While I enjoy being with Gregory and am able to love him as he is today, in his world, I also know that I do not want him to "stick around" for my benefit and I know that his condition will continue to get worse.

The separation will not be easy but I know that I will get through it. I also know that while I can decide, via Power of Attorney over Health, what measure will be taken; I cannot decide when his life will begin to end. That is his job and the universe which watches over him.

So getting to the point of this post. It is not easy making these decisions on Gregory's behalf. The first thought that came to mind was what "Extreme Trust" he has placed in me to make these decisions.

Then a second through quickly replaced the first, which helps explain why these have been emotional times for me.

The EXTREME TRUST is that which I place in myself to be able to make these decisions on Gregory's behalf!

Grand Mal Seizure

Today at 8:15 am I received a call from the Lieberman Center telling me that Gregory had a seizure and was sent to ER. I quickly got dressed and went to the Skokie Hospital's ER. Luckily the hospital is just across the parking lot from Lieberman and both are only 10 minutes from the condo.

Gregory was resting comfortably. He was not upset or frightened. His usual pattern is to remain calm (as I have learned to do.) He was happy to see me and between various tests I  held his hand, talked about things, and sang to him. He dozed on and off which is usual after a seizure.

The seizure was a Grand Mal which is the larger one when compared to a Petite Mal. The Petite Mal sometimes involves a temporary staring off and often goes unnoticed. The Grand Mal is the one with passing out, convulsing, shaking, eyes rolling back, and the danger of biting one's tongue.

Luckily for Gregory, he was in a sturdy chair at the breakfast table and when he began the seizure the head nurse was in the dining room. The Lieberman staff acted quickly and efficiently and I am grateful for that.

The various tests that Gregory had did not show anything unusual. He will be in the hospital overnight for observation. I now understand that in the later stages of Alzheimer's approximately 25% of people experience seizure activity. The doctor has prescribed a low dose of anti-seizure medication to help make sure this does not happen again.

For now all is well until the next dip in this roller coaster ride. G is doing well. I am doing well and again the word grateful, I am grateful that I am not having to do all this alone like I have done for the last ten years. I have a huge group of people supporting me and Gregory and it feels good.

Settling In - Not Always A Good Thing

I hope the title of this post confused you. Settling in should sound like a good thing. But they say it takes a while for a new resident to settle into new surroundings on a dementia ward.

It takes time for the workers and nurses to get to know the residents routines and needs, rhythms and patterns. As you know, we have had two Care Conferences dealing with these things. Everyone on the floor is friendly, helpful, and wanting to do the best for Gregory.

So why is it not always a good thing. Would you believe two falls and one fright so far? The day after he was at Lieberman, the nurse called me around 8:00 pm to say Gregory had been sitting on the sofa in front of the TV and when he got up he fell on his knees. No great damage. No broken skin. A little pink. Nothing more. But wanted me to know. I thanked her and it felt good that they were keeping me informed.

Last week, I noticed that Gregory's ankles were swollen and I told the nurse. Later that week I notice that his ankles were very very swollen and mentioned it to the nurse again. At midnight she called at home and told me that she checked and sure enough they were so swollen that she called the doctor. He told her that Gregory could go to the emergency room for a workup or she could order a blood clot scan the next morning.

She and I talked about the implications and I decided that we could wait until morning for the test that would take place at Lieberman instead of putting Gregory though the trauma of a middle of the night emergency room visit. One possibility in waiting was that if he had indeed thrown a blood clot, it could travel to his brain or heart.

I told the nurse that while I hoped that wouldn't happen, we were not afraid of death. It was a hard decision for me to make and I had a hard time falling asleep. Finally, I said out loud, "Universe, if you are ready to take Gregory, please go ahead, I am ready, he is ready, and you have our permission." That said, I fell asleep easily.

Next day the clot scan showed no clots, they put him in special stockings to help with the swelling, and the ankles have looked better each day.

Finally, at seven AM this morning, I got a call from Lieberman that Gregory, after being up and dressed, fell backwards in his room (there by himself) and was found on the floor with a gash in his head, a bruse on his forehead, and in a lot of pain. They had called 911 and the ambulance had just arrived to take him to the hospital (which by the way is just across the parking lot.)

I had my clothes on and was out of the door (without any breakfast and not even one cup of coffee) in five minutes and got to the emergency room less than 10 minutes later. I am grateful that Lieberman Center and the hospital are so close to the condo.

Gregory looked terrible and was moaning with pain but had been able to remain calm throughout the ordeal. He was happy to see me and I soothed, stroked his hand, etc. They did a CAT scan and several X-Rays and found no additional damage. After the blood was cleaned up he didn't look quite so bad (head wounds bleed profusely.) Eight stitches later and a breakfast of oatmeal and pancakes the ambulance picked him up for the trip across the parking lot back to Lieberman.

Gregory after napping on and off in his own bed in his own room back at Lieberman and after a hearty lunch is with Alaksh (who I called for support right away, not knowing how severe the injury had been.) I am at home getting ready for a 90 minute massage and then will go back to sit with Gregory.

While this all might seem difficult, it has been surprisingly easy to get through and to make decisions about. In my role of Secondary Care Giver, which you have already heard about and will probably hear about again, it is good to have so many resources and people supporting me and caring for Gregory.

Besides the people that got him ready for the first ambulance trip, so many people have checked in since our return to his room: head nurse, day nurse, the social worker, his day caregiver, the lunch lady, and various higher level supervisors. Gregory is indeed being well taken care of.

Sorry for the pix but in an effort to fully document ... PS later I will post a photo of  how GOOD Gregory looks after the episode.

We've Named Him: Mr. Stone

On a happier note, earlier this evening Gregory passed his 3mm Kidney Stone and did so without any pain. We were both pleased and surprised to see this black mini-meteor fall into the strainer with a "clink." We were both relieved.

A Visit to the Emergency Room

Gregory is OK but last night we were in the Emergency Room from 7:00pm until 4:00am. He was diagnosed with Kidney Stones and hopefully they will pass on their own in the next few days. 

The difficulty was his lack of language and/or associations to be able to explain what he was feeling and where. He was in a lot of pain and through he was going to die. 

Also he became delirious which added to his fears (and mine.) This is the second time Delirium hit so now that I understand it, I was prepared and not as frightened. When it happens he looses all the abilities and awareness that he still has.  He becomes totally irrational. For more information on Delirium click here: Delirium: MedlinePlus Medical Encyclopedia

With the help of a neighbor we got him to the car and I drove him to the hospital. I didn't want to use an ambulance with sirens screaming etc, to add to his confusion.

Once the pain subsided he did better and the ER experience, while with supportive staff, was just boring and long. On a kind note, the hospital keeps feel for family while they are waiting. I had a turkey & cheese on whole wheat sandwich, cranberry juice, and a package of Lorna Dune cookies. 

We slept in this morning and he is much more aware and feeling fine, just a little "beat up."

I'm keeping an eye on his urine, we have Vicodin in case he is in pain again as the stone moves out.

So all is well, but wanted you to know,

Love ya,

Michael

P.S. I couldn't help but think about my sister, brother-in-law, nieces, and nephews who spent many a rushed visit to ER with mom.