Hi Dear Friends,

Barb, I hope your bronchitis is all gone by now.

Just got bad news from Bill. Anna's niece (her brother's daughter, 23, an RN planning to get married next month) was just diagnosed with MS. She has not been feeling well for the last 18 months, and it took this long for anyone to put a name to her condition. Anna is my sister in law, the one who now cares for their 2 month old granddaughter 5 days a week, has leukemia and severe spleen pain, and is tired more easliy than other people, and now has this news to contend with ... while their dog is dying ... and my AD mother lives with them ...

I almost feel guilty that MY life is so easy right now, while my SIL is surrounded by trouble ..including Mom ...

They are plannng to go to FL in 3 weeks - taking Mom along because E can't take her until October 10th, too late for the wedding, which I hope takes place anyhow .. although I wonder if her bridegroom would back out now, knowing she has a chronic condition not curable (but treatable, and not life shortening from what I have heard) ...

Poor Anna! She has a very full plate right now and although a caregiver by nature and training, I wonder how much she can take. Bill 'minds' Mom all day long, but Anna still gets to bathe her, do the extra washing and cleaning and whatever else an AD person causes in the way of work, tension and suffering ...

But what can I do from here? I volunteered way back in June to go to NY for the time they are at the wedding, but Bill recently said no, we'll just take Mom along ...

The last few big parties we went to while I was her caregiver were distressing ..at Thanksgiving she soiled herself and everyone fled from the dinner table - at Easter she didn't know whose house we were at, and talked nonsense to everyone, assuming I's grandma was A's departed mother - and on Mothers Day she was completely irrational ...

How will a wedding and a reception in a strange city go? A motel room?

It boggles my mind ....

Bill has a lot more courage than I do...

Meanwhile I'll be minding my grandsons during their dad's work hours from Sept 28 to Oct 5 while my daughter goes to Germany for her father's birthday. Last time she was there was in 99, before our marriage broke up ...

I had planned to go to NY, but called that off when sister E promised to take Mom 'in October" ..yes, but too late for this wedding .... so, soon after returning to NY, Mom will be packed off to Ohio. Yet Bill constantly says "Mom is OK as long as nothing changes in her daily routine."

Love,

Martha

Hi Martha,

I'm so sorry to hear that Anna's niece has this distressing condition - especially at such an early age and happy time of life. Bless her heart! Bless Anna's, too. Hope the groom realizes this is part of "for better or for worse, sickness and health..." and chooses to remain strong and present. Also hope that Ingrid and Frank's upset is over and all is well on that front. That would be such a relief to Anna. I'll keep all in my prayers.

As for Bill and your mother, I think he has shrea, shrea down to a science and just takes things as they come with your mother. His statement that "Mom is okay as long as ..." leaves a lot to the imagination! She's okay considering her age, her diagnosis, the time of day, and what else? He and Anna try to keep things simple and go places where she's been so she might be okay (the lake). When the odd things come up, they take her with emergency supplies in the car and hope for the best. The folks who she's with understand her diagnosis and make allowances. It's still easier with 2 people than it was for you alone. Remember that, sweetie. Maybe they'll need an evening caregiver to bathe your mother, put her to bed, and do the laundry. You could let them know that the cost would be okay with you.

I think it's wonderful that you'll be with your little grandsons while their mother is away. It's such a treat for everyone - for you, for the boys, for their father who will not worry about who is caring for them, and for their mother who can go with the certainty that her sons are in loving hands. What a gift!! Enjoy yourself!!

Another thing to remember is that life after caregiving is another guilt-free zone. You did your time when it was the most worrisome and thankless because your mother had not been diagnosed for much of that time. You juggled your job with the commute, the errands, and your very elderly mother's worsening condition - with the added uncertainty of what you'd come home to in her mood and the state of the house. You did well. Now you've offered to return if needed to give Bill and Anna respite or to be there for any other reason. You cannot do more and should not try. Bill and Anna know you're willing to come and help and that is 1,000,000% more that Moo is!

Continue to delight in your new life. Savor autumn in the countryside. Look at your picture of Central Park in autumn and smile, lift a cup in salutation. That was beautiful, this is beautiful. God is good! Be at peace.

Hugs and blessings - Barbara

Hi Martha,

I agree totally with Barbara! You deserve to enjoy your life now. You did your time as your mothers caregiver, now it is your brothers turn! Explore and enjoy your new town and a new season.

And above all, try not to feel guilty. Your brother will tell you if they really have to have your help. But, like Barbara said, they can always get a part time caregiver, if they need to.

How old are your young grandkids that you will be watching and playing with during the day. How many days is that? I am sure they will enjoy playing with you - their grandma!

Take care and be retired - or semi-retired! Love, Wannabe

Thanks girls, I needed that shot of optimism!

The boys are 3 and 5, The older one goes to Kindergarten and the younger one goes to pre school 2 days a week. My daughter will be away just over a week. My Ex is having a huge family get together for his 70th birthday. My son in Florida might go also, but is not sure due to work complications. J will be away from Sept 28 to Oct 5. My son in law has a few of those days off, but whenever he works - he's a nurse - (3 to 11:30 shift) I'll stay there overnight.

Yes I do believe Bill has a 'shrea shrea' philosophy of life .... good for him ..I was always trying to change things, I didn't have 'the wisdom to know the difference!'

Love to all,

Martha

Update on my Mom:

Now she sees a monkey, hears it and smells it. It sits in a tree on Bill's property. When she is out there "watering the flowers" (not the grass, which is dying, she doesn't see the lawn as a living thing, but drowns the flowers) she sees this imaginary monkey up in the tree. She talks to it, talks about it non stop, and seems happy it is 'there.'

The niece's wedding is in November, not October. I got that wrong. Mom will already be BACK from Ohio, so they have to buy 3 round trip tickets for FL instead of 2. I again said I'd come out and Mom-sit for the weekend, (they are gone only 3 days ) but no," Mom can go with us."

Bill is getting really really exasperated .. after being very cool and calm, this 'monkey business' drives him nuts. He is ready for a reprieve. Mom flies to Ohio on the 10th of October, returns on the 30th .... I wonder if E will still find her to be a 'scintillating conversationalist' like in March.

I figured out her life expectancy on a website ..it figures how long an AD patent can manage outside of a nursing hme, and what their life exectancy is (it only gives averages based on age , length of illness, and stage.) Mom could easily reach her 100th birthday! Her 97th b'day occurs while she is in Ohio with E. She has 6 to 18 months before abslutely needing custodial care.

I am not allowed to give websites on this Board, but maybe you can find it by searching for other Alzheimer inrformation sites...

(not even sure it is good to know such things, but they are all ranges "between 18 and 36 months. " It isn't specific enough to be really scary. My feeling about Mom is that she will die of old age or her heart problem befoere Alzheimer's takes her ...

Way back in the 20's my uncle, her brother, went to South America and came back with a pet monkey which lived with them in a NY apartment for several months ..it became apparent that it was no house pet and they gave it to a zoo. Maybe the monkey in the tree is a hallucination based on having really had close proximity to a monkey 80 years ago..

This is a weird sickness ....

Love,

Martha

Yes, this is a weird sickness. But how fortunate your mother is that her halucination isn't scary to her. She's not frightened by it and she enjoys it. I've heard some AD/dementia patients go through HELL with their halucinations.

Martha, you offered to help Bill and Anna. NO GUILT! You earned your freedom. You were willing to help. I'm sure Bill appreciates that very much.

I feel terrible for Anna's neice. I know what my friend (a 32 y/o mother of two) goes through. She says the medication they have now is better than it used to be and PT, although painful, helps a lot. My friend leads a relatively normal life. She doesn't work anymore but enjoys spending more time with her daughters (12 and 5).

I am feeling much better. Thanks for thinking of me. I still have a cough but not nearly as bad as before. I was a little worried earlier today. I was having constant pain in the middle of my chest for about 3 hours. I don't know what it was but it went away on it's own. It stopped like it started-instantly.

It's 8:20 and I'm ready for bed now. I went to bed at 8pm last night. I used to be a late night person. Not anymore. Early bird is me.

Love, Barb

Hi Martha -

I wonder if your mother sees a monkey because in her mind she's that age again? My mother spoke in terms of being a child after she'd forgotten I was her daughter (she was too young to have a daughter my age) but long before she stopped speaking. You may remember my saying Mom asked if her mother knew where she was and if she was going to be late for school. If your mother speaks of other things from her childhood, it will clue you in. As Barb said, it's good she isn't frightened of what she sees. This is a weird disease.

Any more news about Anna's niece? I wish her well.

Barb, glad you're better!

Hugs - Barbara :)

No further news on the young lady with MS, except the wedding will go on as planned.

E called Mom yesterday and Bill heard Mom telling her all about the monkey ..he came from Cooperstown and now lives in a tree in Bill's yard ..Mom know he's there because she smells him .

NOW how can Elsie not think Mom has dementia???

M

Hi Martha,

As many people here (yourself included) can testify, denial can continue despite all facts, proofs, professional diagnoses, and reason. BIL and Moo are just two of the offenders! It really wants to make you say,

"Do you know how stupid you look by apparently clinging to the notion that all is well with Mom (MIL, whoever) despite all evidence to the contrary? :eek: You prefer to dismiss the eye witness accounts and for what? To save money, save your feelings, maintain an ostrich head-in-the-sand posture? Even strangers on the streets are aware that this person is not okay! You can pretend all is well, but we all know it's not "well", so you're pretending or stupid. There is no other alternative. You're not fooling me!"

Okay, who says that to who first??!! :D

Glad the wedding is still on.

Hugs - Barbara :)

Barbara, you made me think of my grandmother when you said Martha's mom might think she's the age she was when they had the monkey. I hadn't thought of this in quite some years. I remember when my mom's mom thought her mother would be worried if she wasn't home in time for supper. This is what she told me, her then 22 year old granddaughter. She thought she lived down the street from where we were. She actually lived where we were. The home she lived in when she was the age she was thinking she was (does that make sense?) was more than 100 miles from my aunt's which is where she lived at the time.

Martha, as stubborn as Moo is, if she is no longer in denial she'll never admit it. But I agree with Barbara. There are some people who will just never get it-even if it's staring them in the face.

Luckily, my sister I think is coming around. She admits that dad is worse than he was a couple of years ago. That's a huge step for her.

I hope Bill and Anna aren't getting water logged out there on Long Island. I hear there's some flooding in that area.

Love, Barb

Yeah, they're getting a lot of rain, but he told me New Jersey was hit worse ...

Yes ..E will never admit to being wrong about anything . I try not to think so, but it is proved true again and again. She always has to be right and re-writes the facts to prove that she was. One day she will tell me "I TOLD you over and over that Mom had Alzheimer's but you wouldn't believe it." That's how she is!

We are getting some MUCH needed rain also, and are very thankful for it!

Love,

Martha

Oh the twisted AD mind .. now that they have been inundated with rain for the past 24 hours, Mom went out, took the garden hose and watered ...THE GRASS!

Neighbors went by and shook their heads. Bill thinks, let her do it, if it makes her happy and keeps her occupied for a little while ...

M

We got some much needed rain too. Finally, GREEN GRASS!!! I was beginning to think it was supposed to be brown and crunchy. :)

My son just told me something disturbing. I certainly hope it's not true. He said one of his teachers told the class that scientists believe the bird flu will cross over to the human population either this flu season or next. She said that when it happens, scientists expect 1/3rd of the population to die of it. She told the kids that some people in that school would certainly die. How scary! I believe the bird flu will eventually cross over to humans. But to say 1/3rd of humans would DIE from it? I don't think they really know yet what would happen to humans infected with it.

I think someone's just blowing things out of proportion.

Love, Barb

I feel it is inappropriate for a science teacher to make such a statement. There have been a few cases of bird flu in Asia in humans. However, there is no proof that an epidemic is coming, and meanwhile the flu vaccine makers are trying to incorporate it into the yearly shot before it ever gets anywhere near here.

1 out of 3 victims of the old "influenza" actually died ..this was in 1918 and everyone was horrendously weakened by the results of the War (WW I) thus unable to fight it off .. this does not mean 1/3 of us will die. That is a horror story ..talk to the teacher yourself and find out if that is what she really said or meant ..


Love,

Martha

My son's IEP is coming up soon. I'll see that teacher then. I am going to ask her about that. If she really said that (not that my son's lying, because of his ADD and learning differences-others say disability but I DETEST that word with a passion, he tends to mix up the facts sometimes), I'll let her know what I think.

Love, Barb