Journey Through Dementia

Journey Through Dementia

Wednesday, May 29, 2013

Some Days You Just Have to Cry

I am incredibly grateful for social media today.  There are SO many people who have walked this walk with their aging parents, and the supportive comments are so helpful. 
  • It is hard, Bev. It is unfortunate to go through, but the alternative is worse. Try to laugh with these moments as there will be a day you will wish for them back. Smile You are an amazing daughter to be doing all this.
  • My mom's adjustment broke my heart, but the reality was that she grieved losing her independence, which she had actually lost, even at home. It broke my heart, but in assisted living, I knew she had help close by, AND she was much closer to where I live.
  • It's a hard road we travel, despite it being out of love. Know that there are others who have walked and are walking similar paths, and you will make it through this transition, even with some bruises and scars. Hang in there.
  • I remember the frustration and anger (mine) wondering why my mother couldn't see clearly what I was seeing. Why she wouldn't do what we thought she should do. Sometimes we thought she was pretending. It is very difficult, especially when you are without siblings to assist with the decisions.
  • I read your tale of mother's move and settling in and I have to admit, my thoughts were "I'm glad my mother went so suddenly, and while she was still enjoying life and had all her faculties." Then I had a twinge. My adoptive mother spent her last few years in a nursing home with Alzheimers. My sister lived there and dealt with her and all the details. I just saw her once after she got moved there. She had no idea who I was. I think.... I don't know... I guess I was lucky to be so far away and not be in on all the details. Maybe I understand my sister's bitterness and anger a little more now. In any event, for what it's worth, know you have my respect!
  • I am feeling for you so much right now. We dealt with my mom's dementia for nearly 11 years. It was often like dealing with a termperamental toddler. So hard to make that reversal from the parent-child relationship.
As I become my mother's mother and she becomes her daughter's daughter, it is so painful for us both.  I miss the mother I once had, she misses her independence. It frustrates her when she can't remember things, and angers her when she can't do what she wants to do.  But she is not aware of 90% of what she can't remember.  She just asks over and over again and while I am more than willing to answer each question as if she hasn't already asked 20 times before in the last 10 minutes, I do realize how emotional draining it is for me.

In the years that we hosted foreign students, I developed a "foreign student" way of speaking, where I slowed down my speech and used very simple English, so that it all sounded conversational but yet was easy for the students to understand.  I have noticed that I am using "foreign student speech" with my mother now.  My conversation is slower, my grammar is more simple, and I automatically repeat vital information during the sentence I'm saying so she hears it twice instead of once.  Sometimes this helps, other times she turns around and asks me the thing I've just told her twice.

But you really can't be impatient with her.  It's certainly not her fault that she can't remember, and I know that it embarrasses her when she can't.  I try to find ways to remind her without letting her know that she has forgotten. I also try to make it a big funny joke when it is ME who gets something wrong and when I forget something.

I've decided that I really need to have breakfast with her every morning for the next week or so.  In addition to the fact that the breakfasts are really good! and that they aren't charging me for them right now, I never know what I'm going to find in the morning.  The first morning she was disoriented and scared.   The second morning she was asleep and when she woke up and saw me everything was fine.  Today she was dressed, but didn't know if she should go to the lobby for coffee or not and was so happy to see me.  I reminded her she could have made coffee and she said she didn't have any ground coffee, but I reminded her of where the bag from Peet's was and that she did, indeed, have coffee.

But today she was insistent and angry.  She wanted to return to Terra Linda TODAY.  She has THINGS TO DO and important things she needs to bring back to Davis.  When I asked her what they were she said "I don't remember, but I know they are important." I asked what was so important that couldn't wait a few days and she just insisted that she needed to do it NOW.  

She decided she would go home with Ed when he stops by to see her this afternoon.  She'll spend a few days there.  I reminded her that she won't have a car and that her chair will be in Davis and there will be no place for her to sit to rest her back when it starts hurting.  She'd find some place, she insisted, but there were THINGS she needed to do RIGHT NOW.

I finally got her to agree to wait until Friday when I said we could call and make a hair appointment with her hair dresser, whom she usually sees on Friday.   We called Hannah and rescheduled her appointment from 9 2 p.m.  That seemed to settle her down a bit.  I also left a message for Ed warning him that she was going to ask him to drive her to Terra Linda.  He assures me he won't do it.

We had a lovely breakfast and then I again steered her to the puzzle table where we worked for 10-15 minutes.  She does love puzzles and I figure if we do this after breakfast every morning she will get that activity imprinted in her head and that will give her something to do out of her apartment. Right now she's afraid of getting lost if she leaves her apartment.

She did answer her cell phone (with which she has been trying to turn off the TV) when I called to let her know I had ordered her AT&T service.  That was a big step forward! Her new phone should be working by the time we get home from Terra Linda on Friday.

She also wants to go to the local CVS store and assures me that she can walk by herself, but (a) she has no clue where it is and (b) there are no benches on which she can rest when her back hurts.  I told her I would take her the first time so she knew where she was going.  She said she had to make a list of "all the things" she needed to buy.  She's been saying that for 3 days now and I keep offering to drive her to CVS, but that seems to be too much for her and she gets frustrated because she can't remember what she needs to buy, but she will make a list.   So far she has not started one.

I'm thinking that if she decides she must walk to CVS herself, I will follow her in the car so I can pick her up when the back pain gets to be too much.   Hopefully we can forestall that for awhile.  Heck, she still isn't sure which way to turn going out of her apartment to get to the dining room; I don't know how she thinks she's going to be able to find CVS by herself.

I came home last night and went to sleep at 9:30, waking only briefly at 1 and then sleeping until 6 a.m.  Everything comes with its perks and this situation is making me so exhausted I'm actually getting SLEEP.

Tuesday, May 28, 2013

Roller Coasters

Well, this experience certainly is interesting...and definitely has its ups and downs.

When we last left our intrepid heroine, she was happily relaxing in her new home, and said she was going to take her time unpacking boxes so that she could truly make this apartment hers.  She was going to go to get breakfast at 7:30 and would see us for brunch at 11:30.

Sounded great.  I came home and slept like a log all night.

This morning I gave her time to get her breakfast and then showed up at about 8:30, newspapers in hand.  I could not believe it when she opened the door.   Her face was flushed like she had been crying.  There wasn't a light on in the house, all the curtains were closed and she was shaking.  "Oh, thank goodness it's you," she said.  "I just didn't know what to do."

Poor thing. I felt so sorry for her.  She hadn't been to breakfast because she didn't know where to go or even which way to turn when she left the apartment.  She said she had lost the call button that they gave her when she came in (the local Life Line) which she was supposed to wear around her neck at all times but it wasn't there and she didn't remember where she put it.  She hadn't had anything to eat since breakfast yesterday, she said (I knew THAT was wrong, since we all had burritos around 3:30).  She just seemed so terribly helpless and lost.

I turned on the lights and gave her her newspapers.  I took her out to the front lobby and showed her where she could get coffee and some pastry and we came back and talked.  We did an in-depth search for her Life Line, which had just disappeared.   After a frantic search, it was found -- around her neck.  Crisis averted.

When her coffee was gone, she went by herself back to the front lobby to get more.  I considered that a major break-through and I decided NOT to put an arrow on the door pointing in the right direction.

Walt came and took her empty boxes to the dumpster.  The three of us went to their brunch.  I let her take the lead and did not point her where she should go.  She managed to find the dining room all right. It was kind of interesting.  They advertise a carvery station, Belgium [sic] waffles and mimosas, none of which were visible, or offered, but we did have a lovely breakfast.   They had fabulous fried shrimp which was crisp, not soggy, as you would expect from being in a warmer.  Also, the eggs benedict had runny yolks, which I never find in warming trays.  I would have liked a Belgian waffle, but didn't see where I could order one.

A little lady came and sat with us and, I have to tell ya, she made my mother seem like a Rhodes scholar.  I think it also gave my mother an ego boost to discover that this was one of her fellow residents.  It's always nice to find someone more confused than you are! I don't know how long she has been at Covell Gardens.   She did tell us in one of her more lucid moments that she hasn't been there long, but she has lived in Davis longer than Walt and I have (and we've been here nearly 40 years).

I reminded my mother about her "date" with Ron, the ambassador tonight.  She had totally forgotten that, but I hope she remembers long enough to "put on her face," which she said she would have to do.

She still thinks she's going to walk to my house to pick up her car from time to time.  I just let that pass without comment.  

We were going to go shopping for some supplies, like shelf paper, a garbage can and other things that could freshen up the place, but when I asked if she'd rather do that today or tomorrow, she said tomorrow.  She said she had "all the time in the world" to get settled.  And to my utter amazement she said she can hardly remember "that other place" where she had lived.  When our breakfast companion asked where she had come from, my mother looked at me blankly and said "Bev, where did I come from again?"  She had unpacked her shoes and put them away without a single comment about shoe choices, and most amazing of all, she said that maybe after three weeks or so, when she had her apartment all straightened out, we could go back to her other place and stay the night and get some cleaning done.  I tried not to express shock at that statement, given that she was adamant yesterday about going TODAY to clean it all up.

She also said that she didn't understand why the movers had gotten lost trying to find her house yesterday when it plainly says "260" on her mailbox and on her house.  Only 260 is not her house number.  I didn't mention that she had forgotten her address!

Of course, I know full well that she could totally change tomorrow and demand to be taken "home".  I am avoiding saying "home" at all with regard to Terra Linda, but just calling it "Terra Linda."  There are a couple of vital things I forgot to take, like the charger for her cell phone (tho if I can get her land line installed this week, that won't be a problem) and her address book.  If I think of a couple of other things, I might drive back there without her and pick them up, but hopefully I can just have Ed bring them.

When we left around 1:30, I told her I would go to Peet's and get her some coffee so she can make her own tomorrow.  I did, and by the time I got back to the apartment, she was asleep on the couch, so I just left the coffee on the counter and let myself out quietly.

I'm looking forward to getting a report on her "date" tonight and whether she meets new people, so I'm having breakfast with her tomorrow morning.  I think I'm going to take her to see The Great Gatsby on Wednesday.  It's playing in town and it seems to be the sort of movie she would really like.

Monday, May 27, 2013


That's "thank God it's Saturday."  If it's Saturday, it means GRANDMA IS MOVED!!!!!!!!!

It was not exactly easy and there are many rough patches ahead, but when we dragged ourselves out of the new apartment, leaving my mother looking like death warmed over and feeling like that ourselves, the house looked good, she seemed satisfied, and we had so many people to thank for making it all work as well as it did.

My cousin Niecie took her for a long drive out to West Marin to see wildflowers, the ocean, and have a nice oyster lunch.  That gave Walt and me time to get in and do some packing.  Jeri last week and my mother's stepdaughter Ellen the week before had been working with her, but she had been resisting doing actual packing and though they did get a lot done, they didn't do nearly was much as they wanted to do because she was so resistant.

With her gone,  Walt and I filled box after box, emptying all the drawers of all the pieces of furniture that were coming up here, and moving all the boxes staying into one room and boxes going into another. Walt worked his tail off while I was on the phone canceling her 2 newspapers subscriptions and her Comcast (which is also her telephone service).  That always sounds easier than it turns out to be.  It probably took me half an hour to get that done, during which time Walt had packed a dozen boxes or more.

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The first battle was over shoes.  My mother LOVES shoes, and working in a thrift store for 20 years, she was able to buy lots and lots and lots of shoes for not very much money (though the idea of wearing used shoes makes my skin crawl, she loves it)  But there are shoes in the collection of >50 pairs that still have the sales tag on them and shoes she will never wear again (high heels).  I don't know if it was Jeri or Ellen, but someone got her to separate out the shoes that were going to Davis and the shoes that were going back to the thrift shop.  There were two boxes, one marked "shoes for Hodge Podge" and one marked "shoes for Davis." 

Well, she went ballistic when she saw the two boxes.  WHO made that decision. SHE had never been asked. She was going to have to go through both boxes again. She insisted that she was NEVER consulted on the decision and was afraid the wrong shoes would go to the wrong place.  When she calmed down, I moved one box into the "stay" room and into the "go" room and she seemed to forget about it, though she did remember after we got to Davis, but the fire had gone out of her protestations by that time.

She also got furious when she was told (not for the first time) that she would not be able to have her oven hooked up or bring her microwave.  She asked (not for the first time) why not.  I explained (not for the first time) that her doctor had given her the diagnosis of mild cognitive impairment (good thing she didn't know that the first diagnosis was dementia!) and the place does not permit machines which might accidentally be misused and cause a fire. She was angry and embarrassed, but couldn't fight it--it was her doctor's diagnosis.  She was highly indignant and said her doctor never even tested her, but she doesn't remember that she has tested her a couple of times. So hard for her...

Another battle was over the "stuff" left behind.  The watchword for the weekend was "I'm so glad we can take our time going through all this stuff.  We don't have to decide everything today."  But by that, it turned out, she meant that we would move all of her things to Davis and then tomorrow we would go back for another few days and finish cleaning up the house.  I told her absolutely not.  She was going to stay in Davis for a week.  A WEEK???   She couldn't possibly wait that long.  She wanted to go back right away.   

I finally solved that problem by pointing out that we had both been under such pressure for so long that we deserved a week off, that she could take six months, if she wanted, to clean everything up, if she didn't mind paying an extra   $6,000 rent to do it.  That took the wind out of that particular sail.   Even moreso because I left a lot of boxes to be unpacked and things arranged the way she wants them in her apartment.  She wants to take her time and do it right and obviously if she is getting her apartment in order, she can't be cleaning up her mobile home 70 miles away.

I discovered that she doesn't so much want to just give things to Hodge Podge, but she wants to give them to specific people.  The kitchen counter was filled with things like half used packages of birthday candles, paper coasters so old they had lost their color, rusty tape measures, lots of pencils and other detritus that she doesn't want to throw away, or even to give away to HodgePodge because she wants someone she knows to want all this crap.  I can't seem to make her understand that everybody she knows has been offered stuff and they all suffer from the same syndrome:  too much stuff, and nobody has any desire to add more stuff.

We went out to dinner and then Walt went home.  I would follow the next day driving my mother's car, which we would then keep. Well, THAT wasn't going to go over either. She needed to drive her car. She needed to visit friends (whom she hasn't visited in 2 years), she needed to go shopping in San Rafael (for what?), she needed to go do some things at the thrift store, where she hasn't worked for a year. I know this is really, really hard for her, maybe harder than moving.  Thank god Covell charges for parking spaces and it really is silly for her to pay for parking when she can park in our driveway for free. She thinks she is going to walk to our house whenever she wants the car, though she doesn't know how to get here and there is NO WAY she could walk that far without her back giving her fits. I suspect we will be dealing with the car issue for a long time. I really don't want to tell her that her doctor told me six months ago that she needed to stop driving NOW and that I should hide her car where she couldn't find it.

Ned and Marta came down early this morning and were such a huge help, especially Ned.  I don't think we could have done things as efficiently as we did without him.  I was grateful to him many, many times during the day for all of his expertise.

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The movers did a super job, but were halted briefly when they went to move the piano (which they moved HERE) and found a dead mouse under it.  Ned says that looking at the inside of the piano it was clear the mouse had been living in it for some time.  In fact, there were several pieces of furniture that we moved which had shocking amounts of mouse droppings under them. Obviously Stuart Little had been having a gay old time in that house for a very long time!

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But we eventually called it a day, packed up some of the live plants, and headed off to Davis, through Memorial Day traffic.  

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A second before I took the above picture, she was sitting there, looking so forlorn, her head in her hands. I felt so sorry for her, but hoped that her mood would brighten as we started setting up the apartment in Davis.
The movers did a great job and, per my request, they moved my mother's special chair in first, so she could sit down and watch the proceedings without hurting her back too much.

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It had been Jeri's keen eye which made her take a tape measure to the two beds in my mother's house, and discovered they were identical in size.  We had planned to take the guest bed, thinking it was smaller, but we were able to take her own bed, so she doesn't have to sleep in a "strange bed" tonight.  It fit perfectly.

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(and look at that nice garden view she has to look at when she wakes up in the morning!) The floor rug had to go because they can't have any sort of throw rug there...too great a trip hazard.

Tom, Laurel and the girls arrived to check out Gaga's new pad.  They are going to be going to Terra Linda in a day or two to pack up the dishes and the glass cabinet they are in, but for today, they had a good time exploring Gaga's new garden.

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Throughout the day, members of the staff dropped by to introduce themselves and give her information about the place.  A guy named Ron, a resident ambassador, came to introduce himself, tell her about things, and invite her to dinner with him tomorrow.  He warned her that he had "lots of girlfriends." Just a really nice, warm, welcoming guy and, of course, attention from a man was just what she needed.

Carlos, the maintenance guy, had been in earlier and got her TV installed, and with most of the furniture in, it really was starting to look like her place...with a lot of boxes.

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When we left she wasn't thinking about Terra Linda, but about "taking her time" to unload the boxes, put everything where she wanted it to be, and make this really "her" apartment.

Such an incredibly good sign.  I am bone and brain weary tonight, but happy and feeling hopeful about the future!