This week had some victories and some grand defeats, which are to be expected - the defeats; victories are somewhat uncommon, so we grab them when we may. Lewy Body Dementia is known to be a roller coaster ride with so many inversions, twists, peaks and valleys; I also think of it as sliding down the ladder. As we grow older it seems as though we are nearing the top of whatever ladder we’ve created. When Lewy Body hits, it’s as though a rung breaks and causes the patient to slide until they can grab hold of a good rung - then with whatever strength they have they try to ascend, but only to have a rung break again.
This week, Mom went for walks with Morina around the church and then back. It’s not a long distance, but it is enough to get her blood moving and her body in motion. It’s also good for stimulating her senses and allowing her to breathe fresh air away from her room where she tends to hibernate.
Mom still hasn’t showered. There have been many, many attempts, even with her agreeing to do so, but then she forgets and doesn’t. The staff is a bit frustrated. Mom is still tending to skip breakfast but comes out for lunch - at least in the early parts of the week. She’s also good about taking her medications.
On Wednesday, Connie and Jean popped in on Mom for a visit:
Connie and I visited with Norma today for three hours. She spent all that time sitting in her recliner, leaning to the right (see The Lewy Lean).. (Two brief bathroom trips.) Sunday's paper was there, and the July 17 Sentinel. I turned to the story on page 5 of my dad and three other boys who, in 1915, climbed a 200-foot steeple at St. Francis Church. A little interest, not much.
Beige pants were on, with a few stains. A stained white shirt with a black sweater completed her outfit,along with her nice sandals. When I commented on her not wearing compression stockings, she said she "did not feel the need for them." So I told her I wear them, too, not for warmth but for good circulation, which helps her heart, her lungs, and her whole body.
Lynn came in, and asked if we would like it cooler. "Yes, please!" we said. She set it at 68, which was fine. Norma did not mention being too warm or too cool at any time, but that black sweater looked pretty warm to me. Lynn said Norma had eaten all her lunch. (I think that's what she said.)
I think today was the lowest level of conversation we've had with Norma. She rarely said a full sentence, yet spoke freely in phrases, with expression, sometimes searching for the word she wanted, then going on, not always in the same direction. At one point she said,"Where's Tony?" and I answered, "He will be right back." On to something else. It was all agreeable, conversational, but no sense that we could see. We added our neutral comments as seemed appropriate.
Norma commented on Connie's red purse, held it a few minutes, then returned it to Connie.
I started looking in her closet to find other pants, after saying that pretty plaid shirt would go with blue, or red,or white. Blue and white shorts are on her closet shelf, but I think she does not care to wear shorts. I saw long bluish pants. Did not look in her dresser; next time I will ask permission to do that.
I had brought ice cream bars, and tried to entice Norma to the great room to eat those. Finally told her Connie and I would start without her, and I would check back with her in five minutes. Could not get her out of her room. She said her lower back hurt, and she should have a doctor check it (NB - her back pain comes and goes. The more she is able to exercise, the less she experiences it. The doctor has stated it is arthritically related, and Mom does take medication to relieve the pain but refuses to take it much of the time)..
We were close to leaving,when Norma stood to head for the bathroom. I was standing in front of her recliner and steadied her just before she pitched forward to fall. Close call! She did seem frightened by that,but we realized how easily she could fall and break a bone.
On Thursday, I phoned to speak with Morina who helps Mom with walking and other activities, including stretching and strength exercises. She was able to get Mom to change her clothes, but still no shower. She takes Mom for walks around the grounds - outside the cottage - to the church, then they wander through the gardens and come back. Typically, Mom needs only one resting time on a bench, but she relies more and more on Morina for balance, and her shuffling gait is much more pronounced. We celebrated the victory of Mom changing her clothes! We hoped this would bring more change for the better.
Yesterday, Mom spent the entire day in bed. She refused food and never came out of her room.
Today, Sunday, I contacted Leddy (Mom’s favorite staff member, along with Morina) and asked how Mom was doing. She responded by stating Mom was very confused and Leddy was trying to get her to shower - she’s sleeping in her nightie again! Another victory (not the confusion, but the shower part)! I inquired about taking Mom out, but it didn’t seem a good idea which Leddy confirmed (I still had no idea about yesterday).
Upon arrival, Mom was in the loo which gave me time to chat with Leddy. The staff is quite concerned. Mom’s condition has worsened so quickly. This morning she was talking about how her grandmother was going to be angry with her. She still hadn’t showered - she seems to be agreeing to do it, but then forgets about it after she enters the bathroom - coming out to crawl back into bed.
She did eat breakfast this morning which is a good sign. Her voice has weakened and she speaks in broken phrases - many times incoherently. This is a sign of LBD.
Leddy stated that she is not having any issues taking her medications and they would give them to her with yogurt - that way, if she refuses food she will still have something.
We agreed that unless something changes dramatically Mom won’t be able to go out on visits any longer; that perhaps her systems are beginning to shut down; and that this is the inevitable reality we had expected - but not really.
We also discussed the use of a walker - whether Mom would actually use it or would it be an expense that would be for naught.
And, too, we talked diapers - but we both laughed when Leddy looked at me and said, “You really think your mom would put those on her?” Enough said on that topic!
So, as a matter of preparedness, I will be off shopping for waterproof mattress covers that will, most likely, be a necessary evil. But, if it crinkles like a plastic cover, then this will torment Mom and create more issues than she needs.
Finally, I was allowed to visit with my mum. There she lay, sprawled under a cozy blanket, across the bed in her nightie.
“Hi!” she said, “what are you doing here?”
“I came to see you! Why are you so sleepy?”
“Goodbye. I’m too tired.”
And that was it.
I had hoped to take a snap of her new hairdo, but it would appear that hasn’t happened yet.
IN summary - Mom is much worse. She may show signs of improvement, but all the breadcrumbs (the babbling, mental confusion, speech issues, the cognitive issues) that have popped up in the recent couple of weeks have converged. What lies next is something we can only accept.
No comments:
Post a Comment