Saw this and found it poignant.

Dementia is an Insidious Disease

 

Well worth the read.


Can a patient be asked to leave a memory care facility due to aggression, anger, and other bad behavior with no notice?

“Yes, they can refuse to take him back. It sounds as if his behavior is the problem and he probably disturbs other residents. Behavior can also become a safety issue if he is combative.

Just as the facility can refuse to take him back, your mother can do the same. Simply tell the hospital that she is not able to provide the ongoing care he needs. The social worker at the hospital will have to find appropriate placement for him. Something similar happened with a friend of mine. The person receiving care had become impossible to be cared for at home because of behavior. After talking with a number of memory care facilities and non that would take them, the only option was a State psychiatric facility and they happened to have space available just when they needed it.”

 

It seems Mom is having some aggression. The family reaction has been to blame the facility to encouragement in the form of telling her she got her licks in on the man that wandered into her room.

My wife wants nothing more than support from her brothers and sisters. It is a lonely journey so far, and I don’t think it is going to get crowded anytime soon.


The Calendar

Calendars mark time, they are used by most of us to relate to future events. To dinners with friends or a night out with a loved one. Doctors appointments, trips to the vet, school plays, all displayed and noted to keep track of your life.

Sometimes you use a calendar to relate to the past. Usually it is reverenced when you miss an appointment such as, “I’m sure I put it in my calendar!” A quick check either confirms your action, or lack thereof.

Mom has a calendar. It is nice, shows her grandson and his wife and her great grandson. She doesn’t know who is in the pictures. She will sometimes write about future events. Where she will be on a holiday or a hair appointment, the usual entries. But the real reason for the calendar is to note when people visit.

Mom needs to write down who was there. She says she sometimes feels no one visits but then she puts her reading glasses on, reviews days gone by and realizes that her family has been there. We try to make sure when we are there that she marks it down. The last time I was with Mom she wasn’t sure to put Mike Y. She had to pause to remember my last name. Slipping, slipping, slowly slipping away.

We sat outside that day, enjoying the spring sun in a lovely courtyard inside the assisted living facility. It was around 2 in the afternoon with snow still on the ground but warmth in the air. Conversation is always superficial. Weather, work, life. This day she couldn’t remember if she had lunch, or what she had for lunch. That being said, I knew that in a couple of hours, like that lost lunch, I’d not even be a memory.

Hopefully she placed me in her calendar, her manual memory.


A Life Condensed in 20 Minutes

Like it or not we are sometimes measured by our possessions. Bigger house, bigger car, closets full of trendy clothes all contribute to our feelings of worth. We have more we feel like we are “more.”

We moved Mom into assisted living a couple of months ago. I took some time off and I needed it. But I’m back and have some reflections on this move.

The title sums up some feelings I had. It shows that when you are moving into another stage of life, things get condensed. We moved Mom in two vehicles and maybe 20 minutes. 84 years of life shrunk to a few boxes, some clothes, a chair, some pictures, and we were done.

Her spirits were good as this was the first time she saw her new home. Joe came and helped move in her few needed belongings to aide in personalizing an institutional environment. Each door has a shadow box nearby to reflect the personality of the resident. We chose a recent picture or our trip up north and mini version of her world record certificate along with two world champion medals for Mom’s diorama.

She was introduced to a care giver that would be with her for most of the day. In this facility they have someone stay with the resident for the first 24 hours. This helps the resident have fewer fears in what can only be an unsettling transition.

We returned to a quite house without a quite sometimes brooding, seldom talkative Mom. The whole event from door to door couldn’t have taken an hour and a half.

Now we settle in for the next chapter.

 


A Sad Conversation

Mom and I talked a bit when she came home from Joe’s today. I had spoken with Kathy and she told me Mom had a good day. Here dear, old friend Queenie came to visit, and it has probably been a year since she last saw her. Queenie had called in the past but it is infrequent.

Queenie came and took Mom to lunch. In the meantime, Janet came to get Mom but she was still out with Queenie, so Janet ran some errands and collected Mom after her lunch.

Mom got home around 7, we were finishing dinner when she got there. She went to her room, and we cleaned up the kitchen.

I was sitting on the couch after a day at work and Mom came in and we began to talk. She started by expressing her frustration with memory loss. I usually will ask her if she did anything and so I began that line of questioning. She Thought she went to dinner at Kathy and Mike’s house. I’m not sure if thought she was at dinner at our house, or if she thought Joe was her son-in-law Mike. I didn’t want to pursue it.

She said in so many words how this depressed her. She told me she prays often but it doesn’t seem to help. She even said she wishes she would die but realizes that is not an option. I tried to console her the best I could. I told her I was always ready to talk if she needed it. I let her know that we were here to protect her and keep her safe.

I told her she was fortunate in that people half her age die of cancer or accidents. I pointed out that she has grandchildren that she loves and loves her and that many don’t get that opportunity.

We left it at that. I told I was here for her. But I know that with Alzheimer, she won’t remember the conversation in the morning. And we will be back in her routine that doesn’t offer much in stimulation. And she will keep to herself and pretty much keep quiet. And that is a sad conversation.


9/11/2001

MSNBC is rebroadcasting the terrible events of 9/11. Mom has been sitting and watching. She hasn’t said a word. I don’t know whether to tell her this is from 13 years ago or if she would even know. She doesn’t know the name of the president or the year so I’m looking at this somewhat as a detached observer.

After about an hour I had to engage her. Since she seldom initiates any conversation, I mentioned that 9/11 was a terrible day and asked if she remembered it. She said yes but nothing else. No recollection of what she was doing that day, or asking about what I was doing. Just a yes.

The lack of conversation is a cruel part of Alzheimer. It is strange to say “good morning” only to be given an icy stare as a response. Dinner is spent in silence. When the kids come over Mom will eat with us but never get into the conversation. Usually after she eats she goes to her room.

In the past, Mom had a habit of not wanting to be a bother. She would tell us she was giving us “space.” I am guessing that this habit of leaving the table and retreating to her room might be part of this behavior.

We will never know.


Vacation

DSCN0356Vacation with Mom and the folks from Seattle. A nice place on the bay in northern Michigan. 8 days away from the grind of life.

We’ve been back about 3 weeks, and I’ve taken a bit of a break. Not much has happened that is earth shaking or life changing. The drone of life continues. The routine is in place once again. But it has been interesting to see the contrast from a few weeks ago to today with Mom.

On vacation she was more talkative. Now she isn’t. She will come out of her room and say nothing. If we talk to her she talks but she never greets us, never says good morning, never initiates a conversation. We could spend an entire day in silence if we never started the topic. Probably the only time Mom would talk would be when Kathy or I start dinner. Then she asks “Can I do anything?”

Up north she would sit outside. Here she never goes out unless there is a lot of prodding. We have a pleasant patio, she just sits in her chair in the family room. I wanted her to garden this summer. Since winter was brutal I thought she would enjoy being able to take care of a plot of land. That wasn’t to be. She took no interest and I was too tired or involved or ambivalent to lead her and work with her daily to do gardening chores.

Up north she would have coffee. Here never. I offer about every other day. She declines.

Up north she would eat breakfast other than toast. Here I offer eggs, or something different from toast. But other than pancakes she will always say no.

We realize we cannot give her the stimulation and engagement she needs to live a fuller life. We can take her out to dinner or shopping but that isn’t a daily event. There are long periods in the day where Kathy and I are at work. Mom is in the chair when we leave, and in the chair when we get back. We take care of her life, we wish more were involved to take care of her entertainment. But I guess everyone is busy. Everyone has other priorities. Everyone works. Everyone has chores.

We are moving ahead with assisted living.  We know our attempt at caring isn’t the best arrangement. At the time it made sense. Now, not so much.

 


Lack of Caring

This is when being a caregiver gives one pause. The daily interactions with Mom are remote. She seldom talks. She doesn’t go outside very much. Only seems to exhibit OCD behavior when it comes to the couch covers being straight and the dog toys being put in the basket. We suggest things, buy puzzles, word search games, and give her menial tasks to keep her time occupied.

We are not the best caregivers. We work, have kids, have the stresses of life. We get tired, crabby, argumentative, judgmental and can feel quite alone at times. In fact we feel quite alone most times. We nave support (3,000 miles away) yet local support is slipping away. Not by our choice but by another one of Mom’s children.

We spent a busy day yesterday. The Seattle folks were here and we started exploring assisted living and memory care facilities. Navigating the murky waters of care for a loved one is stressful. After visiting 3 different locations, we were spent. The stress level was taxing. Now comes the hard part. Weighing he pros and cons and making very hard life changing decisions, for someone else.


Taking Laps, Inside

I know it is a classic Alzheimer symptom, but Mom’s pacing seems to be increasing. Last night it seemed she couldn’t get settled. She was up from her chair, into the living room, into her bedroom, back to the chair, up from the chair to the patio door, back to the chair, into the kitchen, back to her room, back to her chair.

So here we are, the day after the pacing. Mom went to Joe’s and as soon as she came in the door she has been in her room. She doesn’t have the tv on. We don’t know what is up and we give her her space. This is confusing on so many levels.

Tough day today. I’ll just sum is up by saying some days we walk, some days we don’t.


Another Day Another Excuse

Well, the local “son” won’t be picking Mom up today. The once a week for 4 or 5 hours respite from us, and interaction with her family is once again put on hold. Last week it was on call. This week it is a sewer back up. So it will be three weeks if we are lucky. Then he’ll get a week off when we take Mom on vacation.

Wish I could just tell the “son” don’t bother anymore. Mom can read a calendar. Mom knows that she goes with the “son” on Sunday. Mom during the week asks about her children. Only two of which she sees or hears from regularly. But even once a month breaks are a relief for someone doing the caregiver game.

The “son” of course does not have the balls to tell his own mother that he won’t be coming. No, he gives Kathy a call and leaves a voicemail with another one of his excuses. So we will call the “son” and ask him to call his own mother. This is an adult. This is someone that has benefited from Mom’s generous nature. This is a “son” that seems to only be able to get his mother on a Sunday. No other day. No Saturdays, ever. Never during the week. And no calls it seems. He can only see her, in person, once a week, unless there is an excuse for not showing up, and then he can’t even muster the courage to call his mother and tell her himself.

What a man.


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