Help for the Caregivers of the Sick and Disabled's Journal|
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|Friday, January 21st, 2011|
New member, asking a few questions
Thank you very much for starting this group! Looking forward to meeting you all and sending love and prayers, hope to offer support and encouragement to everyone here.
Hi, I'm Cristina Deptula, and I live near San Francisco. I'm in my late twenties, and I've assumed caregiving responsibilities for a very good friend I've known for seven years. She's a widow with children, estranged from her family for a variety of complicated reasons, and I'm basically all she has left (and we're trying to change that!)
She has adult ADD, narcolepsy, and Jealous and Persecutory Delusional Disorder - so she cannot keep to any kind of schedule, falls asleep at random times of the day and night, and has trouble getting along with others as she can get frustrated and paranoid. She's also the victim of emotional abuse as a child and domestic violence as an adult, and some of her issues stem from that. Now, she's
been diagnosed with ovarian cancer and is undergoing chemotherapy, and has diabetes and weight problems as a result of some of her mental health medications...and she's only 43!
I live about 45 minutes away and do a lot of work for her over the phone and email (selling items on Craigslist for her to help her make extra income, making and reminding her of medical and dental appointments, looking up social services and filling out applications, locating and hiring in-home supportive service
caregivers - she qualifies in Marin County to have someone help out around the house about two hours every weekday, which helps but she calls and texts at all kinds of random hours asking me to make phone calls for her, so she really needs someone who can be on-call, or a team of people.)
I'm all right helping her for now, but would like some way to know what's realistic for her to eventually learn how to do for herself and what she will need assistance with all her life and isn't fair to expect her to handle.
Also, I'm currently 'between jobs' and staying with my parents, who don't understand mental illnesses in general and believe my friend is simply taking advantage of me. It's awkward to have to step out of the house, excuse myself from dinner, etc to make phone calls or look things up online for my friend without them noticing and complaining, and my friend then gets mad about my procrastination and the delays in my helping her. And I don't have any money now myself, I'm selling some of my things on Craigslist to pay off a traffic ticket.
My friend only gets $700 or so a month from SSI disability, which ends up being $300 after she pays her rent. She has two teen children who are staying with her mother because she's too sick to care for them, who don't understand why they've never been able to wear new clothes, own IPhones etc like other young teens in Marin. We go on Craigslist every year to look for donated gifts but this year
the economy was so bad no one was able to come through and help, so we're looking for gifts after the holidays.
I'm looking into work-from-home opportunities so my friend can earn some money on her own and gain some more self-respect, even survey taking opportunities that aren't marketing ploys or scams. Also, something for me so I can help her out and get cash for the gas to drive to and from her place and regularly visit her...she's not near mass transit. I'm currently only making $12 an hour for a
part-time telecommute position that leaves my schedule free but leaves me broke!
Also - I'm looking into internship and full-time work opportunities which would be great for my career but which would leave me less able to care for my friend at random moments. The personal calls and time on the Net became an issue in my last fulltime job, and in order to work like a normal person, we really need a larger support system for my friend. I'm committed to NOT abandon her, but know that I'm going to need to recruit other caregivers to be able to move forward in
my own life, and my parents just took on another financial commitment and say they can't support me forever. I'm also in a relationship which may be heading towards marriage and children, and my boyfriend said a few months ago that if we're going to stay together I have to set boundaries with my friend so that our kids (and his emotional needs, etc) won't get shortchanged. For many reasons we need a group of other people my friend can call upon for help when she can't
reach me...as I'm not able to help out on call 24/7 for the rest of her life, even though I've been doing that since her husband died in September 2006.
So - does anyone here know where to go to recruit additional helpers as an internship-type opportunity? We can't pay for much of anything now but would be glad to reciprocate in other ways (resume editing, proofreading, letters of recommendation, etc?) I see blogs of well-connected poets, singers, etc who have whole legions of folks helping them out, sending care packages, checking in with them, etc and would like to know how to build a support network.
I recently posted this advertisement for assistance on Craigslist: http://sfbay.craigslist.org/nby/vol/2164488574.html
Please let me know what you think - I'm trying to strike a balance between compassion and trying to empower my friend to take care of herself.
Thanks, sorry for the long post!
|Wednesday, July 28th, 2010|
Moving with Dementia
It looks like my Grandma, my partner and I are going to have to move house. The advice I've gotten says that to move a person who has dementia, you need to do it early when they can still own the decision, or late when they don't know where they are. I'm not exactly sure where to put my Grandma on this scale. Sometimes she knows that we are in her house, sometimes she doesn't. Sometimes she knows that she's lived here for years, sometimes she asks me where the bathroom is. She has actually lived here for decades and raised her children here, but she doesn't remember raising children and sometimes doesn't believe that she has any.
I've had lots of conversations with Grandma about moving. The conversation is starting to become familiar to her. She's fine with the idea most of the time. Her only objection has been that we shouldn't take the furniture with us in case anybody else wants to use it. But the more I talk about the move, the more uncomfortable she gets. Similar to when I have to give her pills or a bath - the less talking, the more smoothly it goes.
For my Grandma, home is increasingly where the chair is. After she takes her pills in the kitchen she always says "I'll just go back to my home now" and then she goes to the living room and sits in her chair. So I'm hoping that the presence of her chair and other familiar objects will help to make the new home "home."
I'm aware that many people who have dementia ask to go home a lot even if they are at home. She has started to do this a little bit and she means her childhood home.
She usually doesn't like the idea of changes (changing clothes for example). Her memory is so short that the blouse she's wearing is the only one she's ever worn, it's comfortable and perfectly fine and she doesn't know what the next blouse is going to feel like or how it's going to fit (even if she's had it for years) so she's very reluctant to change. I can convince her to change her clothes and feel good about it, but convincing her to change homes and feel good about it is probably going to take a lot more work. I suspect that after a couple weeks at the new place she will think that she's never lived anywhere else except for when the occasional memories flash into her head.
So, caregivers, any recommendations or advice? I'm thinking that maybe I should focus on helping her feel good about the move and feel like it was her decision after the fact more than before, until she forgets that it happened. What other preparations should I make?
|Thursday, October 8th, 2009|
My partner and I moved in with my 94 year old grandma last year. She's physically very well but she has dementia and needs to have someone around all the time. She is sleeping right now. :)
I hate to come along with a problem right away, but I was hoping someone here could offer some advice. My grandma loves to be in the kitchen. She's always in there, serving herself a big bowl of peanut butter and jam, mixing a big pitcher of rice milk and limeade, making sandwiches and bowls of cereal and planting them all over the house... one time she couldn't find the bread tie so she coated a paper towel in honey and wrapped that around the loaf of bread instead. The wasted food and the grocery bills are getting pretty discouraging. Every time I go in there, the counters and floor are coated in honey and jam. When she's not in the kitchen she can frequently be found in the laundry room running her hand towels through the machines one at a time.
Keep in mind that this is her kitchen, and has been for at least 50 years. She does not think of herself as old. She occasionally asks me how old she is, I tell her, she is flabbergasted, and then she immediately forgets. She has no idea that she's doing anything out of the ordinary and doesn't like interference so I usually stay in the other room and listen and cringe while she's working, then sneak in and clean it up. I feel bad when she catches me cleaning up her messes, and the amounts of stuff we waste is kinda horrifying. I feel strongly about reducing waste in my own life, so this is a little ironic. I wonder if there's an alternative to just accepting that my grandma has a wasteful, expensive, messy hobby and leave it at that.
Any ideas? Thanks much.
x posted to dementiasupport
|Friday, June 12th, 2009|
Caregivers in Pennsylvania watch out!
I just found out about a bill that being snuck through in Harrisburg to EXPAND Estate Recovery in a pathetic effort to balance the state's budget. I'm livid about this.
Basically if you are a caregiver taking care of someone (even your spouse) and they need to receive assistance from Medicare or Medicaid (almost everyone who needs nursing home care these days...unless you are related to Donald Trump or the Rockefellers), the Commonwealth of Pennsylvania is trying to pass a law saying that even if your home was previously "protected" from Medicare, they will put a lien on it to recover the expenses that were paid. It's known as HB1351.
It used to be the surviving spouse/family/caregivers could still keep the family home/farm under most circumstances, but the thugs in Harrisburg want to change that and make a couple million to help balance the state budget on the backs of the elderly poor and their families.
And yes...you HAVE to be poor before you can even qualify for Medicaid, spending almost every dime you have before the Government will help with long term care. And your family home, forget about leaving it to your children, they can't inherit it, they can't finance it and why should you even keep it maintained if there's a Government lien on it?
Together with my husband, I have formed a Political Action Committee and put up a website & blog to start to get the word out. Check it out! spread the word!http://www.caregiversagainsthb1351.com
|Wednesday, May 20th, 2009|
Leaving a caregiving job - adequate notice?
I work as a caregiver through an agency. I am planning on leaving the agency in order to focus on my schoolwork, but I want to be careful about how I do it in order to safeguard the emotional welfare of my clients. The "standard" for giving notice that you're leaving a job is two weeks, but because of the nature of this kind of work, I feel like that's too short, particularly for clients who I only see once a week. Would three weeks be better? A month? Advice from caregivers or people who receive service from caregivers is welcome. I want to do this right.
|Tuesday, May 12th, 2009|
Update on Mom
Hi everyone! Spring is coming in lovely here.
Mom has gone downhill a bit, but ,so far she is still her funny cute self, just seeing things that aren't there and talking back to the TV.
Seriously, at this point if I don't laugh, I'll cry -- and I've cried quite a lot lately.
What gets me is you get used to the New Behaviors -- wrapping random things in kleenex and insisting her items of clothing she's had for years aren't hers. Then she starts to dissect her food and you figure out that she thinks anything with texture is paper or rocks or glass or bugs -- -- and before you are used to that, she starts to wake up early in the morning and you discover her naked sitting on her bed and her nightgown is a wet soiled mass on the floor of the shower.
Now, I have a thing about poop -- I am almost paranoid about poop germs and now I have to steel myself to clean up random smears. Never mind that it's my own Mother -- that does my head in.
I have to get some plastic gloves tomorrow.
And do some retail therapy -- new towels sound nice.
Oh, girls, if this entry sounds flippant, -- it's just that things have moved real fast in the last month -- Mom is on the next plateau, as our case manager calls it. The dementia has progressed and I had to make the really tough decision to put her on the list for long-term care. It was a heart-breaking decision, but the stress levels at home are through the roof for all of us -- even with a great PCW, and my sisters and nieces helping.
It's just that every day is scary now -- I fear the next drop in her ability to recognize us and her world.
She had no idea Sunday was mother's day, even though we wished her well over and over and by now her gifts are forgotten -- she thought it was her birthday for a while -- tonight it was Christmas.
Then Mom comes back for a moment and compensates by saying -- Oh, I was kidding, or I know that, do you think I'm senile?
No, Mom, I don't. Current Mood: sleepy
|Thursday, April 2nd, 2009|
Hallo! I need your help or advice.My little cousin is ill with cancer. He is treated in the hospital of Moscow, Russia. As he is a citizen of Kirghistan the treatment is without any discounts and insurance. Chemotherapy costs about 1000 USD a day. Today he has finished the first course of it. At least another 10 needed.We asked the donation charity organization www.nastenka.ru to help us, they put information on their website http://www.nastenka.ru/Rusver/help.php
, I need to spread the information and I do not want people to think that I am a spammer or beggar. If you have any idea how to spread the information or to collect money for the treatment, please write. If you want to help donating there are different options on the charity fund website http://www.nastenka.ru/Engver/rekvisit.html
. It is necessary to mention that you donate for Amirchik Saleev. Thank you.
|Friday, February 27th, 2009|
Donezipil no more!
Donezipil or Aricept -- whatever you call it, don't give it to your loved one for late-onset Alzheimer's or age-related dementia.
My mom was on it for the last two years and over that time her memory got worse, she had confusion and fears at odd times, and worst she had awful recurring nightmares and sleep terrors and other sleep disturbances. We even tried her on anti-psychotics for a time. A total mistake which threatened to turn her into a zombie that slept the day away.
I had a moment of clarity and took her off the Aricept 3 weeks ago. It's like I got my mom back! Sure, she still has awful short-term memory, and she repeats stuff, but her sense of humour, her ability to hold a conversation, and her personality has returned. She can watch a TV show again and follow it, and hasn't had ONE nightmare or sleep disturbance. This, despite the fact that she had to have a tooth pulled and was in great pain (usually sickness makes dementia sufferers more confused, but Mom's been fine!)
I accept that she has age-related dementia and we don't know where it will go, or how it will end, but I will never put her on memory meds again.Alzheimer forum Current Mood: accomplished
|Sunday, February 22nd, 2009|
Thanks and invitation
First, I'd like to say thank you to those of you who read my intro entry and replied with your wonderful words of encouragement and hope. Thanks for being there and listening.
Secondly, I'd like to invite you, if you're interested in reading my future entries, to come on over to my journal. I'll still post here from time to time, but since I'm really diving into this, I'm going to be posting a lot and I have a tendancy to be pretty wordy and long winded. I'd rather people come to my journal and read if they're interested than daily bombarding this community and getting people sick of me. So, if you want to read my stuff I'd be thrilled to have you do so and to really try to get to the meat and bones of dealing with being a caregiver.
Current Mood: hungry
Update on Mom -- today is a good day :)
I feel I have to update everyone on my Mom and her well-being. (wrapped up with my own, of course.) I have moved forward A LOT with how I cope with her changing needs. I have packed my bookshelf with current books on the subject of Age-Related Dementia and Alzeimer's and feel I have a better perspective now.
It's still hard work, and can be very sad, but I am now able to be more empathetic to my Mom, and my frustration and anger are now about what the symptoms do to
her rather than warping my feelings about
This is a BIG deal. As anyone caring for a a loved one with a terminal illmess can tell you, you go through a real grieving process with all the stages, and I am close to the acceptance stage.
This does not mean that I have no hope -- but I no longer hope for a CURE. I believe that my Mom, who is 91, is experiencing brain aging, which may or may not be Alzeimers -- which itself may or may not be a form of brain aging!
I focus now on my relationship with her, helping her have pleasant experiences in her day and helping her through the confusing moments. My capacity for patience has exponentially increased now that I no longer focus on her condition. My attitude change came with time and a lot of great books -- listed below -- hopefully some of you can get some help with your own loved one too.
Kara:) Current Mood: calm
|Wednesday, February 18th, 2009|
So far down the rabbit hole...
...seeing a light at the end of the hole is more likely a train coming at me than peace and enlightenment.
I think I've finally hit a wall and I'm so blinded by the frustration and anger and confusion that rather than trying something else or making some positive changes, I just keep backing up a few steps and running head on into it over and over.
( the sordid storyCollapse )
Thanks for listening.
Current Mood: lethargic
|Friday, January 16th, 2009|
This is my ex-girlfriend, Danielle. We were on an episode of Maury Povich years ago.
We were together for almost 9 years but she broke up with me last April. We would have been married but she is dependent on government healthcare and as a married couple we would have made too much money to qualify her for MediCal -- no private insurer will cover her. She has had Osteogenesis Imperfecta (brittle bone disease) since birth, and is quite fortunate to have made it to 29 years old. I do not love her anymore, but she will always have my respect for the things she has persevered over in her life.
When she dumped me she had a full-time job working as bookkeeper for her parent's window installation business -- due to the economy, that business is shut-down now, and her folks took a job running another glass shop in Maui, Hawaii. Her brothers have lives of their own and are moving away from her. She really doesn't have anyone left to take care of her and now she's landed on my doorstep again. To make matters worse, she fell in love with a man in Wisconsin over the Internet and flew across the country to meet him only to be stood up by a "Dear Jane" email. She is drowning in debt, broken-hearted, and she has nothing left here in California... but me. And, quite frankly, I don't want her anymore. She dumped me and I've fallen in love with someone else, but I cannot bring myself to fully abandon her to what she's brought upon herself. When I first met her she was full of life and incredibly positive -- now she's a wreck.
I'm trying to get her to move to Maui to live with her folks, but she insists that if she does that she'll end up living like all the other osteogenesis imperfecta victims she's gotten to know -- living with her folks until she or they die, never driving, never doing anything but watching TV and counting the seconds.
I don't love her anymore but I can't bear the idea of her ending up like that. Is there anything I can do for her? Are there government or private charitable programs that can help her stay in California and achieve the independence she wants and deserves? She'll need at least $3000 just to get herself and her car out to Hawaii and I certainly can't come up with it.
|Wednesday, January 7th, 2009|
|Friday, December 5th, 2008|
National Hug Your Caregiver Day Initiative
National Hug Your Caregiver Day Initiative
Caregivers are the backbone that supports our society. They come in many shapes, sizes, and focus in many different areas. Everybody knows caregivers. They can be parents, spouses, family, friends, healthcare providers, massage therapists, chiropractors, nanny's, babysitters, pet sitters, or anybody else who has taken care of another living being.
Caregivers are also some of the most ignored and taken for granted people in our society. These people dedicate part of their lives, if not their whole lives, to caring for others. And yet, they are often touch deprived and feel under/un-appreciated.
Started in 2008, the National Hug Your Caregiver Day Initiative is trying to raise awareness about caregiver appreciation. We are helping people learn to show their appreciation for the caregivers in their lives.
Join our yahoo group at: http://groups.yahoo.com/group/hug_your_caregiver_day/
Use this blog
to share your stories about caregiving, or to share your stories about a caregiver who is special to you.
The website is being created and will be going live by January 2009.
"Smile! You're getting hugged!" Current Mood: ecstatic
|Friday, February 15th, 2008|
Free Social Media Tool for Caregivers presented by AGIS.com
Being a family caregiver takes up time, energy and it can be overwhelming, but how do you organize help? How do you delegate? And what do you do when someone says, "If you need something, just let me know?"
That's why AGIS
, one of the web's premier resources for eldercare information and community support, is bringing a new tool for busy caregivers through their CareGroups
. CareGroups creates a free social media group calendar that allows several administrators – most likely the primary caregiver(s) – to open, create and invite people to view a calendar of caregiving duties that can help make caregiving easier for everyone involved.
Need someone to take mom to the doctor? A neighbor to help run some errands? Someone to pick up dad's prescription at the pharmacy? You can schedule all of this through this easy-to-use site. With Lotsa Helping Hands CareGroup technology, you coordinate scheduled tasks, find and organize resources, share updates about your loved one's health, post messages, and share photos.
|Wednesday, February 6th, 2008|
|Wednesday, January 30th, 2008|
|Tuesday, December 25th, 2007|
|Monday, December 3rd, 2007|
|Thursday, November 29th, 2007|
How do you handle the holidays when caregiving? Are there special things you need to do?
I know the Christmas my grandma was ill (and we were taking care of her) everyone was just really quiet - which is weird for my family!