Tuesday, March 13, 2007

Ok, the stroke report

It's been at least a month since my Mom had her mini stroke.
Physically she's doing great. Mentally, she's still losing, or not finding words & her memory seems as much as 25% worse.
Because she's doing so great physically, she's not eligible for Medicare/Medicaid services.
I haven't given up. I'm waiting for calls from 3 different social workers- to get their take on it.

So that leaves me as primary caregiver. She is staying at her own apartment with her little dog.
She's getting meals on wheels & I've stocked her fridge with yogurt and Ensure. She won't cook & can't figure out her microwave.

Here's my life for now:
Call her twice a day for wake up and medicine reminders
Take her to 2-3 appointments a week
Have her over for one whole day a week
Arrange all of her appointments Doctors, OT, Speech, etc. etc.
Manage all of her medicines -refills, pick ups, stocking her pill box weekly
Shop for her or with her

Andy does help but he's a working and traveling man

It sucks, but it is what it is. She may get better, she may get worse or she may stay the same.
She's still mean & now is very needy & depressed.

I am managably stressed ( good one!).
My stomach is a mess, so I've had to give up a lot of heavy foods.
Alcohol feeds anxiety attacks, especially the 3 am ones, so I'm not drinking now
I'm exercising to help cut the stress and it works - plus the husband of the gods rigged a way for me to watch movies on my computer on our recumbent bike : )

I am trying my damn best to focus on today, everyday, some days are better than others.
I've given up all of my knitting design work, and most of my school volunteering, which cut another type of stress.

It will get better or I'll get used to it.

Meanwhile I went shopping.
Target is either the best or worst place in the world.
Today I found this:

$25. It is unbelievably cute. I want to wear it with pink Converse.
This & the fact that it's 65 degrees makes me a happy woman today.

Also, Target has started carrying Kiehl's. It seems more expensive than the website, but it's right there!

I'm going to try to post destashing sale yarn every Monday. This is how I'm going to pay for going to SOAR this year. Hooray!


Anonymous regina said...

Jeez, Jillian. That truly sucks. I went through something similar, though my history with my mother sounds like it was pretty different from yours. She was pretty much incapacitated for the last half year of her life, and I dropped everything so I could take care of her. Even though she was a really nice person, the demands of taking care of an adult who needs constant care can be INCREDIBLY draining. I don't know how I would have managed if i had already had my children. I'm glad you're being so philosophical about it, and gladder still that you're taking care of yourself. As you know, caregivers often neglect to take care of themselves. For whatever it's worth, you're in my thoughts and I'm sending you all the good vibes I can muster. I know that good vibes don't do a whole hell of a lot. I wish I could do something to help you. Sigh. Hang in there.

3:29 PM  
Blogger Amy said...

Hi Jillian,
You should apply for a SOAR scholarship! Seriously.
My grandma (94) might move in with us--she's not mean, though.
Do you have time to read? I've been really into Juliet Marillier's books recently--maybe you'd like them, too, they are based on fairytales, take place in the past on the british isle and have lots of craft. They are a good escape. I'll send you my copies if you send them back when you're done.

3:53 PM  
Blogger Pippi said...

Dude, you have given up al-ke-hol?
No knitting and no drinking????
Do I have to hop a plane?

Seriously, tho, what ever gets you thru the moment. And that is all that it really is, and all that we ever have.

4:32 PM  
Anonymous Lee said...

Hang in there. Taking it moment to moment is best and appreciating the spring as it comes. Thinking about you.

6:58 PM  
Blogger Beth said...

I am so sorry aobut your mom. I've been there with grandparents and it is hard - I feel your pain. Doesn't help at all that she's mean. You are a good daughter. I'm thinking of you and I hope she will improve or get some part time care to cut down on your strain.

7:32 AM  
Anonymous standing still for once said...

When Ceil was sick/depressed/alcoholic/COPD for 3 1/2 years after Sam died, it was a "what is the next phone call in the middle of the night going to bring". Hop a plane to Topeka, get her detoxed, try to convince her to quit smoking, then finally ... abot 3 months before she died coming to the realization that her "normal" wasn't mine. It sucks, but doing what you need to do to help her, then in your own time doing what you need to do to take care of yourself will ultimately be the high road to peace. It is also the most amazing thing for your babies to witness. "This is how we care for people. Period."

She's always been a piece of work. That's part of the reason you are, too. However with your little wildflower daughter, you will pass on the strength, passion, and burning creativity without the guilt and anger. She will be incredible because of that.


8:38 AM  
Blogger kristi said...

have you talked to her docs about anti-depressants? i can understand how not remembering things (apart from remembering that you used to remember them) would make one pretty bummed.

also, are there places she could go to be with other people? like a senior center or some sort of activity based thing? More or less senior daycare, but even a couple of hours a week of being with other people might help her feel better which might help you feel better.

hang in there.

10:04 AM  
Blogger Brenda said...


11:17 AM  
Blogger jane said...

i don't you, but i have made one of your sweaters (folly0! i like your sensibilities so i read your blog regularly.

first, you're in my thoughts. it's hard enough dealing with a sick parent when you have a good relationship with them, but when the relationship is conflicted it must really be trying. i lost my mom, who was wonderful, salt of the earth, honest, loving to all people and a great role model, and her final illness really made me take stock of my entire life - scary in places, exhilarating in others. the full gamut. and it was exhausting, mentally and physically. so you are really in my thoughts - and i hope for some peace and clarity for you as well as your mom.

i love to drink, but have cut way back - to loose weight (hello - 23 lbs in six weeks - no beer - not so bad) - and to clear my head a bit. guess what? i am feeling better than i have in years. not to worry, plan to get sufficiently sauced up on the guinness at the weekend.

also, for me, exercise has been key in keeping my head in a good place. it's something you do for you - and isn't at all selfish. keep going. i've read many a book on the bike.

lastly, bought that same dress today in target! too cute!

i hope all good things come your way. i can tell you're a good woman. the world needs more of us :)

keep passing the open windows (john irving - from hotel new hampshire)


5:17 PM  
Blogger Shannon said...

Kiehl's at Target? Oh goodness gracious. Like I don't already have a Target problem? That dress is fab. I saw it in one of their ads and must have one. xoxoxoxo thinking of you!

9:28 AM  
Blogger enallagma9 said...

That all sucks. I'll send good thoughts and warm weather your way.

12:27 PM  
Blogger Jeanne said...

Wow. All I can say is that I am thinking about you. We have a friend who suffered a stroke a couple of months ago and some friends of his started a Share the Care group for his family. It's basically an organized group way of helping a family in your situation. More info on: http://www.sharethecare.org/

Ask a friend to look into it for you. Hang in there.

10:19 PM  
Blogger Janice said...

I am currently going through the same thing with my Mother. But I drive 5 hours every other week to stay 4 days and back. She is 87, reminds us all, if she can't remember something, her head has exploded. She is losing her strength each time I see her. I make dr. apts, getting her taxes done and some of what you do. The only person who is hourly dealing with this is my brother. He is a saint..... She is living with him and his wife. I am so sorry this is making your life stressful, but I undertand it all... a hug to a good daugther goes out from me to you.

1:31 PM  
Blogger ColorJoy LynnH said...

Oh, Jillian! What a hard place you're stuck in right now. I'm so glad you are getting clear on what you need to do for yourself. Self-care is important but sometimes we can't see what we need when we're in the middle of things.

I got through the hardest times of my life by saying little mantras to myself. "This, too, shall pass" got me through a few things, and the Serenity Prayer (or my short version of it which is "I'm not in charge") was helpful in reminding me what I didn't have power over. (Standard version is ...grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.)

You're doing a good job with the changes. Be gentle with yourself, ok?

It's not selfish to take care of you. It's SO hard to deal with difficult family, and worse when you're the primary contact person. Hang in there. Nothing can last forever.

12:31 AM  
Blogger Dot Com Mom said...

Remember, you need to take care of yourself first. Just like on the airplane--they tell you to put on your oxygen mast, then assist your child or mom.

Your mom and your kids need you to be strong, healthy and there. So, you need to make your health a priority.

Vent on your blog--that's why you blog. Let it all out, and we'll help you through it all. You will be amazed at your circle of support and your strenth.

2:34 PM  
Blogger Mandy said...

Jillian, I'm sorry to hear that things are so rough for you right now. That "mean" part must just make everything else so much worse. Sending love... I wish that was good for anything.

6:07 AM  
Blogger Maria said...

Chiming in here as a new reader, also with a similar story. My mom had a major stroke at age 48 and I became her primary caregiver at age 24. It's terrible how there is so much unknown about the recovery and how it will go, etc. I can tell you that my mom (who could be mean or not, depending which way the wind blew) recovered FAR beyond what any doctor was willing to predict. Her stroke was pretty catastrophic, so there was a lot that she didn't recover, but a lot came back. And it took a loooong time. They gave us a year time frame, after which she was supposed to be pretty much static in her abilities, memory, etc. She was still making gains 5 years in.

Good luck and hang in there.

12:28 AM  
Anonymous Anonymous said...

I just watched this wonderful clip and thought it was perfect for your knitting books. I love this Joy Nash woman; I want to party with her.

Gymnastics awkward knitter

10:00 AM  
Blogger Denise said...

Wow. I was just wondering why we haven't seen you at Sweetwaters lately (I need to check blogs more often...)

Sending you de-stressing vibes as I type...can ya feel em?

Take care of yourself. Let me know if you need anything. Dexter's on spring break next week (A2 this week?) so Tess is looking for playmates ;)

3:09 PM  
Anonymous GailB said...

You are incredible! I wish you all the best.

10:43 PM  
Blogger Amy said...

You probably already know this, but Bivoauc also sells Kiehl's products. I've been buying my husband's shave cream there for the past few years.

I don't know how the price compares to the NY store, but I usually try to buy as much as I can from local merchants, now that I know Kiehl's is in Target - it's going to be harder for me to make that conscious decision.


10:17 PM  
Blogger Carmen said...

HI Jillian: First-time commenter here. Sorry to hear about your mother. I'm impressed by what you've written about how you are cutting out things to manage the stress. I'm sending positive thoughts for you and your mother your way. I'm a big fan of Big Girl Knits. I've been knitting for 17 years, but after reading your book, I've busted out of a rut and knitted four sweaters of my own design, following your instructions/philosophy. Thank you!!!

5:06 PM  
Blogger Terri Lynn said...

I just found your site! I love it and your book!

Please take my advice from experience, she can't find her words to say, really. She and you need to get to an American Stoke Assn. sponsored group. YOu will learn so much about things you may not know or things she may need to be treated for that are not being addressed! My hubby and I found out so much by taking his father and attending several meetings. It was a godsend on finding out what kind of stroke he suffered and the best aftercare for it! I will be praying for you and your mother.

3:20 AM  
Blogger Pippi said...

I know you are still alive!
UPDATE this here thing!

12:01 PM  
Anonymous gail said...

I keep coming by to check on you and wish you well.

5:27 PM  
Blogger Margaret said...

That Kiehls at Target is actually being sold illegally (I emailed Kiehls to ask about carrying the line at Target, and boy were they interested to hear that because they did not know about it!)

Anyway, I stumbled across your blog when I was doing a target/kielhs search and just thought I would pass along that the kiehls products at target are old (at best) and probably not so great for your skin (at worst) so passing on it would probably be a good idea :) Just thought I'd pass my info along.

12:23 PM  
Blogger Diane said...

CVA's are devastating to the person and the family. I hope that you find the support you need to be mentally and physically strong for your mother. Remember there is care for the caregiver...

as for the dress and pink shoes great individually but i would personally scrap the combo...

6:53 PM  
Blogger Dianie said...

Jillian, I'm so sorry that you're going through this with your mom. I'm sure that people have been pushing all kinds of support group info on you, but I'd like to tell you about one more, if you don't mind. (Please feel free to ignore!) The website is www.mindingourelders.com, and it has tons of info about elder care. The author spent 20 years going back and forth between about 6 elderly family members, including both of her parents, so she's seen it all! There's practical info as well as good old fashioned counseling sessions. Anyway, I just wanted to let you know that you're not alone!

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