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
Last edited by Martha H; 09-12-2005 at 07:50 PM.
Reason: typos
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.
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
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!'
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 ab****ely 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..
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