Hello Friends,

After a really nice day at school I got home to confusion. Mom was here with yet another new Aide. Her aide was absent yesterday and they sent someone new without telling me, and it just barely worked out, Mom not very happy with her.

BUT today ... the aide told me "she didn't know where the bus stop was." As she has done every day for 30 years, Mom set out with this new substitute aide, for the bus to get to her Senior Center. She walked too far, past the street (2 1/2 city blocks away) where the bus stops. Somehow, some way, they did get to the Center. Mom said "I thought the bus on XX street was faster" There IS NO BUS line along XX street!

This lady spoke with a heavy accent. I could not really figure out what she was saying, never mind Mom. When they got back, she just sat here. Talking. Mom not understanding anything. I got in before she was supposed to leave, but when I said you can go now, she refused. I won't get paid if I leave now. So we had to listen to her long story about her daughter filing for bankruptcy for half an hour.

I said to Mom, maybe you should have stayed to play Bingo, at least that is more interesting than listening to this lady talking! Mom answered, "I wanted to, but I didn't have the $1.50 on me for a Bingo card."

Oh no, here we go again. I told her I put about $12 into her wallet this morning! Well, nothing is in it. We looked together: of the $12, only $4 were left. $1.25 went for lunch at the Center, the quarters for bus fare (separate) were used, but where was the rest? I asked. Mom said look in the bedroom. Where in the bedroom? Here ... in these boxes.

She has a couple of old bath powder containers, full of odd things. No money in them. I also said why would you put your daily spending money away? Are you afraid that when you move to Bill's house you will not have enough money? Do you want to put money away for that?

No.

You don't have to worry, Bill has access to your bank acct and will always give you as much as you need. But this is why I don't put $20 or $40 in your wallet ..it disappears and you don't know where it went.

Oh I know, I lent money to M because she didn't have any on her. The day before she said she lent money to G because she didn't have any. Later "she gave it back." How did she suddenly have it to give back? "She found it in a different purse!" As if everyone, not only my Mom, carries multiple purses with them ...

Now she is upset. Getting lost on the way TO the Center never happened before. Losing money has happened numerous times.

How can I prevent it, especially with a different aide every day?

I called the agency and complained that we were not informed about these 2 new people coming suddenly ..and that the one today didn't know how to get Mom to her Center, which is named on her 'plan of care' with address and phone number, which the aides get copies of ...

The man apologized and said next time they will call ME before assigning a new person, and will inform the new aide that my mother is forgetful and may not know where she is supposed to go, and also that they should NOT believe her if she tells them to take her to this or that doctor for her 'appointment; unless we TELL the aide she has an appt ..

I feel a little better after hearing that Esther is coming back tomorrow. I sure hope so .. but also as usual whenever a new step is taken down the long dark path, scared. Now she can't even find the old familiar bus stop!

Love,

Martha

update: I discussed this problem with Bill. His opinion is that as soon as Mom goes to live at their house (whether the old or the new one) Mom's days of going out on public transportation, even wth the help of an Aide, will end. She will more or less stay at home. It will be summer; she can sit in the back yard which she can't do here, and enjoy the sunshine and flowers. Once they are settled in Farmingdale she will go out for walks with Bill and later with her new Aide, they will take Mom along whenever they go upstate (summer cabin near a lake) etc, but no more going places in the city. It will be a relief for her and for us.

As it is now, she is desperately trying to hang on to her old life style. Before she got an Aide in mid October, she went to the Center on most days, but if she didn't feel like it, she just stayed home, or went to the pool. Until October she actually went to the Center on some days, ate lunch there, took a bus home, and then went out again to the local pool for a swim.

Since returning from Ohio on March 30 - where she was taken by car to the pool almost daily - she has not been swimming. When my sister calls she says either "I only went once this week' or 'it was too cold.' Truth seems to be that she doesn't think of it. The new routine is: the Aide comes at 9, they walk to the bus stop, go to the Center. If early enough my Mom still leads the excercise group she's been doing for 25 years, she eats lunch, takes a bus home. Sometimes stays late for Bingo, but is home by 3 when the Aide leaves and I get home.

I can see why she feels she has no freedom. Of course she could decide not to go, but the Aide will then hang around the house with her ..all day .. and Mom then feels too uneasy to doze off, and just doesn't seem to think of going to the pool for 2 hours (walk, dress, swim, dress, walk : the actual swim is 30 minutes or less) and then hang around with the Aide.

They are not trained to provide entertainment, all we can expect is that she might bathe Mom or wash her hair, or put on a radio or TV program, and sit.

Obviously Mom hates sitting around with a stranger in the house, and is stressed by it. So she forces herself to go to the Center every day.

Bill says hang on for only 2 more months, then her life will become easier ..no pool, no Center, maybe a walk to the shopping area to buy rye bread or anything else she wants, walk back, sit in the yard or house. Not a stimulating life, but those days are over.

All I hear are complaints anyhow ..the people at the Center forget everything, they are unfriendly, they complain all day, etc.

Good news: the Pastor told me yesterday, after our little Program, that the church wants to give me a special good-bye service, and I should tell him which Sunday I can be free to come to church. I asked Bill, and he said they will take Mom for either all of Memorial Day weekend, and go to their cabin, OR, if he has a closing, an appointment or something else, at least for the SUNDAY, all day. So I get a free day to go to my church and be 'recognised' for the years I have been the nursery school teacher. It's more than a month off, but I'm looking forward to it.

Love to all Dementia caregivers,

Martha

Hi Martha,

Bless your heart. I'm so glad your turn is almost over and that Bill is so helpful in special and needed ways. How sweet that your church wants to give you a sending and thank-you service. That's a wonderful kind of hug!

Sorry your mother is losing it. I remember my dismay at how my mother's world shrunk to the assisted living facility, then a locked unit on just one floor, then to a wheelchair and no locks becuase she couldn't wander away any more. She didn't mind any but the first change and soon forgot not to like it. Your mother has had an amazing long, active, and healthy life and I hope we can do as well!

I do wonder if Bill's words of you hanging on for just 2 months are a bit out of touch. You mother has been back from E.'s for how long? Seems only about 3 weeks, right? You've seen many changes and a decrease in ablilities since her return. I wonder if the decline trend will continue over next 8 weeks. If so, your mother could be quite limited by that time. Hope that's not so. As you've said, it would be best if she slips away before she's badly debilitated.

Remember to care for yourself in these days. Select some little treasure from home or from a shop that will speak to you of your coming freedom and be a touchstone for you from now until you move. Your heart will gain strength and joy every time you see this little object.

Blessings, Barbara

I'm so sorry your mom was having a bad day. I hope today is better. The change out of the ordinary along with maybe not being able to understand the substitute aide may have helped to bring this on. I'm glad you spoke with the agency about warning you ahead of time of any changes to the aides and whatnot. They must know how confusing it is to a person with dementia to have a new aide who knows obviously not what she's doing.

Please know that you and your mom are in my thoughts and prayers.

And I think it's fantastic that the pastor is going to honor you for your service. It feels nice to know you're appreciated, doesn't it?

Love, Barb

Hi Friends,

E sent e-mail to B with a CC for me. No answers to my points I raised in my mail. She wrote "B and I agreed to have Mom out here in August." :rolleyes: This is an out and out lie, since B asked her to please please take her in JUNE and got 'no way!' as an answer. August was his poor second choice.

Then she says the reunion will take up the whole days of June 4 and 5, but she and Jack will pick Mom up at her senior center... on Monday June 6, at 1 PM, take her to their hotel so she can have a swim, and then hope to have dinner with 'all of us' in Astoria, I suppose including B and A.

She just assumes we will all jump for joy that we will see them for dinner.

I took your advice, ladies, :D and wrote the following answer:

Quote:
"B will probably be working. Mom's aide either has to call out from this address, or she gets docked for the whole day. I suggest you pick up Mom and Esther (or whoever it is by then) and bring them here. We can call the agency a few days in advance to tell them that Esther could go home at 2 that day, or even 1:30 but then you 100% have to be there!!

I will have to do without the supper that evening, just bring Mom home when you are done. It is the next to last work week for me and I am going to be swamped with moving, packing, planning a graduation program, etc. No time to go out!" end quote

Mom will be happy to see her. B will be working on Long Island from 9 to 6 and will no way get home ..and that may be Farmngdale already - by the time of this evening meal, nor will he feel up to driving to Astoria. I am feeling good about having rejected this meal!!

Love,

Martha

I do wonder if Bill's words of you hanging on for just 2 months are a bit out of touch. You mother has been back from E.'s for how long? Seems only about 3 weeks, right? You've seen many changes and a decrease in ablilities since her return. I wonder if the decline trend will continue over next 8 weeks. If so, your mother could be quite limited by that time. Hope that's not so. As you've said, it would be best if she slips away before she's badly debilitated.

Remember to care for yourself in these days. Select some little treasure from home or from a shop that will speak to you of your coming freedom and be a touchstone for you from now until you move. Your heart will gain strength and joy every time you see this little object.

Blessings, Barbara

Thanks, Barbara,

All very good advice. Bill and Anna are working through the accumulated 'stuff' of 34 years in their present house. They cannot take Mom any sooner. They are still hoping they could close on June 1 and move out soon afterwards, but Mom is scheduled to come in on June 12th. (the 11th is a baby shower for his DIL.)

I did select a small souvenir from Mom's things, and will pack it carefully in my carry on bag. It is small set of cobalt blue china I once carried here from germany ..a bud vase and a candle holder. Blue, to go with my planned decorating scheme ...

Mom says take anything you want, but that's all I can manage.

The time for assisted care is nearing, but no one but me sees it ..outside of all the Aides who have spent a few days with Mom. She needs more help than she can get in a family setting ..but perhaps when an Aide is also present and she is NOT running around the city, things will settle down into a new routine.

It is pouring rain today and I am going to cancel our usual walk to a restaurant. I'll cook. there's a lot of food to be used up in 7 weeks ...

Mom will likely enjoy a day of NOT having to walk somewhere!

Love,

Martha

I'm home and I haven't even SEEN MIL .. I don't want to. Avoiding? You betcha ....

And others NOT as involved as the carer see the issues .. it's the ones who WILL NOT see (note: I didn't say cannot) the truth ... yup, it's ugly . and yup .. we would like to ignore it too ... but we are REALISTS ...

Go eat lots .. LOL Live on take-away for the last week or so ..

Hugs & support
Sally
(who's a bit "blah" now .. kids fighting, the enormity of it all has hit me .. that took 4 hours .. not bad)