just wondering if i have any buddies. family members can count.
Posted by ESG (Member # 4816) on :
I wish I could have hired a caregiver when I was at my worst! Not one family member understood, tried to understand, or helped.
I had to find a friend to drive me to all appointments & one friend did some food shopping for me when I needed help that way.
I was also raising 2 small children, one Asperger (autism) and 1 ADHD. Luckily the school bus stopped right outside our door: I would get them on the bus & collapse until they came home again. I had to get cable TV so I could send them to watch TV for the afternoon: I hated that!
I do not know how I did it, except sheer determination.
Both my children have chronic Lyme, and we all have good & bad days; sometimes I look out for them, sometimes they look out for me. I worry terribly about their future.
Posted by AnnaL (Member # 18464) on :
I don't live alone, but I have hired some extra help. My husband was too tired after working all day to come home and do all the household work that I'm too sick to do. (He also has Lyme.)
So we ended up getting a meal delivery service. (They deliver whatever you order in a cooler on Sunday, and we usually get enough food for 4 or 5 days.)
I also, with much reluctance, hired a woman to clean the house. I didn't want to, but it has turned out to be such a blessing.
So if you can afford it, I say that it can be very helpful to hire someone to take up some of the work so that you have more time to let your body do the important work of HEALING.
Posted by aliyalex (Member # 6976) on :
I feel so inspired to read the replies. Amazing ESG. truly amazing. i raised 2 when i was asymptommatic.
anna, my husband and i only got a housecleaner. i wish we got more help. he burned out and left last year. i've been hiring people for 5 hrs a day. very challenging and expensive. just got medicaid.
i hope things get better for us all.
Posted by grandmother (Member # 19908) on :
I've hired a few people over the years.
One, Marilyn, was wonderful and she made my father's last year a lot of fun. She was a God Send.
These days, you have to be careful, though. Not all of them were as wonderful as Marilyn.
Posted by aliyalex (Member # 6976) on :
i have had the craziest experiences with caregivers. craziest. i had major lyme setbacks from the stress from a few.
last year i took 2 steps with a walker out of the wheelchair and she got so controlling i relapsed.
just wondered if anyone else experienced anything similar.
Posted by cactus (Member # 7347) on :
Haven't hired a caregiver... but since family counts...
When I was diagnosed, my son was 15 mos old and I was practically bedridden from herxing.
My mother and mother-in-law took turns living in with us to do the day-time child care (and cooking for all of us). They were angels!
My husband took over all the of the night-time and weekend kid duties. He is amazing.
And we hired cleaning help.
Friends and family did all the driving to/from appts and hospitals.
We interviewed a few local companies who drive and run errands for people who can't - so we always knew we had that back up available, but we managed without it.
Oh, and the drive up grocery store people got to know us very well!
I did have a few family members who seemed a bit controlling - they seemed so focused on how sick I was, it was hard to get past that. Like when I started walking again... they were so overly concerned it was stressful and hampering. Sounds similar.
I hope you have a good caregiver now?
Posted by aliyalex (Member # 6976) on :
thanks cactus,
i am glad your family was so supportive. mine would be too if i would return to penna. i really dont want to.
it's a journey.
how are you now?
Posted by Tracy9 (Member # 7521) on :
I have Personal Care Attendants through Medicaid and a state program. It is very helpful; if you are low income I believe they have it in every state.
It's a lot of work though. Most of the time I've been too sick to supervise them, show them what to do, and I've had a huge turnover. I think if I were better enough to get out of bed a little and be awake it would work well, though.
Posted by randibear (Member # 11290) on :
you know these stories always make me cry. i am so blessed to be at least mobile, well, at least for the moment.
if i were close to some of you, i would come over free and do everything for you.
bless your hearts, you are some courageous people. i admire your guts and mostly your hearts.
hang in there....it has to get better...
Posted by cactus (Member # 7347) on :
aliyalex, it was a long journey - but I am better now.
The Moms no longer live-in with us, and I am almost completely functional again.
Still have some rough days, and we suspect that I still have bart issues - so there is some bart treatment looming - but for now, I am off abx.
It will get better, you'll get through the rough spots.
Posted by Tracy9 (Member # 7521) on :
Randi, you are just the sweetest thing.
Posted by aliyalex (Member # 6976) on :
randi, that is a nice thought, but in truth, you have to preserve your strength. we will find our ways.
i find there is much turnover, unless the caregiver is very very mature and strong in themselves. there is a real art to it. i havent gotten the hiring down yet but i am learning.
Posted by swachsler (Member # 18155) on :
I, too, have personal care assistants (PCAs). I have at least one person a day, usually two (different shifts/parts of the day).
I couldn't have survived without them.
If you have medicaid and need help with activities of daily living (ADLs), you should qualify.
ADLs = eating, food prep, bathing, toileting, getting around the house (transfering, walking assistance, etc.), medication set up/dispensing, brushing teeth/hair, dressing, help with PICC line or shots, etc.
Basically, ADLs are things that people normally do for themselves (eat, dress, bathe, ambulate, etc.).
If you have enough ADL needs, you can also get hours for IADLs, which is incidental ADLs. These include things like laundry, cleaning, grocery shopping, etc.
Call your local independent living center (ILC) or sometimes called center for independent living (CIL), and ask them to connect you with the PCA program intake.
DON'T start out by telling them you have Lyme. Start out by listing all the things you need help with. Focus on the ADLs first, and give them a list that is made up of your worst needs on your worst days.
This is because sometimes they think certain illnesses are not "real" disabilities, so you want to get across to them your real level of need.
Like Tracy said, it's a lot of work to hire, manage, oversee, etc., PCAs, and it can be hard to find good, competent, caring, trustworthy, reliable PCAs.
HOWEVER, with experience and networking, you can end up with really terrific people. I have had the same 3 PCAs for years, and they are fabulous. They have become like family.
I also now have a new PCA who started out doing just occasional small things and now that I'm in a crash she has been doing back-up/emergency PCA stuff, and is now here almost every day.
It is hard to manage PCAs when you're in a lot of pain, exhausted, and cognitively impaired. However, the good thing about having people who stick around is that they learn your routine and get much better at "winging it."
I have "To Do" Lists that I fill out every night (photocopied form that I just check things off), and I have one section that is "Remind me," and it's very important!
But by now, they all pretty much know that even if I don't ask them to remind me, if I have forgotten I need my bicillin shot, or to eat breakfast, or get my teeth brushed, or whatever, they come and say, "Do you want to do that now?"
If you don't need personal care but you are low income and do need help with house cleaning, there is a program for that, too. In Mass., it's a homemaker program through the Mass. Rehab. Commission.
Your ILC should know about both programs. If you can't find your ILC, go to the ILRU website (I think it's ILRU.org) and search under the Colorado ILCs. Find the one that serves your area and contact them.
GOod luck! -Sharon
Posted by aliyalex (Member # 6976) on :
thank you sharon. really good information. i dont qualify for medicaid, but i just got medicare. i have care givers for about 5 hrs a day. it is difficult to find people who don't get resentful or into drama. very stressful.
sometimes i wish i could just have real professional caregivers. i have a couple who live next door now and they are great. but my person who has been here over a year is very unprofessional. it is trouble when you become friends.
Posted by randibear (Member # 11290) on :
my stepdaughter once hired a woman just to clean her house.
she really liked her but her husband hated her and i understand why.
this woman would come in and rearrange stuff, even her closets, etc.
she finally had to let her go.
it's a fine line and you're better off if you maintain an employer/employee relationship. keep it strictly business, no chitchat.