Just changed work from 5 days per week, to 3. That's good.
I go to a therapist every week who helps me figure out what I can do, what I need to ask for help with, and what to let go. Very helpful.
My 17 yo daughter is still in bed when home. She does get out of the house once or twice a week for fun with friends, but when home, she rests.
My 60 yo husband is bedbound 20 hours per day. Can't drive any more. Doesn't do laundry, doesn't cook, doesn't do anything.
I've hired housekeepers and someone to mow the yard.
I am the only one who can drive them to appointments.
I don't have any family to help. Their illness has isolated us from friends for the most part.
My 2 eldest daughters don't get it.
God, I am tired! I don't know that I can keep going. If I can't, how are they going to get well?
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Oh my goodness!!! I am so sorry!! My 16 y o daughter just was diagnosed about 4 months ago and she is pretty much on the couch most days too. Also, like your daughter,a few short friend outings--necessary for mental health I believe!! I wish I could give you some positive feedback--its been challenging here, even with a supportive husband. I cannot imagine being the sole caregiver. It is so hard for my other 2 kids to really understand too. I wrote a "note" on my facebook page from a mom's perspective of what it is like to be 16 and have Lyme. I think that helped my older child understand more fully (he is 18). Wonder if it would help them to read it???
Maybe having some boundaries--like they have to let you sleep--say like from 11-7, emergency only contact with you. Cutting back on work has to help--tho I sometimes think it is nice to work some, it is where my life still seems "normal." How long has your daughter been diagnosed? Because, when I posted my FB note, people that we had not heard from, began to be more supportive. I really think people don't really understand--but if you let them know, they will pull through. Are you invoved in church?? If so, ASK for help!!!
Hang in there!!
Posts: 63 | From north Texas | Registered: Apr 2011
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posted
I have a ton of respect and empathy for you. I cannot imagine the amount of pressure on your shoulders. I don't have any solutions, but I have a couple of ideas.
A friend of mine who has Lyme was the single mother of a baby and very very sick. At one point she was paralyzed and unable to feed herself. She had no friends or family that could help her. She was so sick she was unable to take antibiotics, her body rejected them. She found a church that primarily focused on helping people. It was the mission of the church. By joining, she had an entire congregation of people who cooked, cleaned her house, drove her to doctor appointments, etc. She purchased a rife machine, and that was her primary treatment. She is very healthy now, able to work a little, walk and exercise, take care of her son. And in return, she now helps others and volunteers her time to the church. Maybe you could find something like this, and find people willing to help out.
My other thought goes back to when I was pregnant with my daughter. I went to a therapist who specializes in Hypnotherapy. It was very similar to the hypnobirthing classes for natural childbirth. I had 3 sessions where she taught me self hypnosis. It is a skill that allows you, with practice, to enter a deep state of relaxation. Because of the tools I gained, I was able to birth a 9 1/2 pound baby in 6 hours, with only 20 minutes of pushing, without any drugs of any kind.
It is an incredible skill that with 20 minutes of meditation like relaxation, you awaken so refreshed and energized. I can't really explain it, but something like this would give you so much energy. Maybe you can find a practitioner in your area. It is deeply restorative.
Those are my ideas, and I hope you can find the energy to keep going. Be kind to yourself. You are taking a huge amount of stress on, and you still need to put yourself first so you can continue to be there for your family. You will be in my thoughts...
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Sending Big Hugs to you from one Mom to another.
Being a caregiver is no easy task. I do not Have Lyme but am the caregiver to our daughter. It is a tough and long road.
I hope you can find some time for yourself. I know this is often overlooked and finding " free time" is easier said than done.
I hope things improve for you with the shorter work week.
{{{ Hang in there. }}}
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
I understand. I am caring for my almost-21-year-old son who is very, very ill. I am 55 years old, and I work part-time and I get a lot of phone calls during the nights I am working, interrupting my sleep. My husband is my son's step-father, and he is a generous man; I only work part-time because he provides for us. But my son isn't his responsibility, and I carry all the decision-making, all the work, and all the worry. Most of the time, hubby doesn't even know what is going on here.
A couple of days ago, I had that "I am losing my wits" feeling. Just completely overwhelmed. I realized how much self-care has gone by the wayside.
I made a list fantasizing "what would I be doing if I were taking really good care of myself?"
My list went something like this: 1. Restorative yoga classes at least once a week, if not twice. 2. Getting up early in morning for alone time and writing in journal. 3. Walking for exercise every day, no matter how short a walk. 4. Massage. 5. Getting away to Kripalu Yoga retreat for a day of R&R at least quarterly. Or some similar day-long "just for me" activity.
This morning, I did the journal, yoga class, and walking, and I felt a lot better.
I feel for you.....I'd like to send you a great big warm compassionate cyber hug and encourage you to make your own list!
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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Susie I would meet you at Kripalu in a heart beat...
Kellye, I feel for you. Its not easy to keep one nostril above the water line some weeks. My daughter Liz is in a similar place as yours. One or two outings a week if she can see friends for an hour or two, just to do something other than a docs appt. Other than that its in bed or on the couch all day every day.
Can you bring the daughters in to your next therapist appointment and get them to try and understand better? You sound like you could use not only their elbow grease, but their understanding so you won't feel like you are going it alone. Just an idea, from an objective friend.
I hope and pray for better days for you!!!
Posts: 42 | From Northeastern US | Registered: May 2010
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I'm so sorry you're feeling so overwhelmed. I think daily on how difficult this must be on the people who have to hold everything together. On and on it goes without much recognition.
Praying you can somehow find even just a small slice of time to call your own.
We finally have had our first appt. with Dr. M., we like her very much and are praying she can help. Hoping your daughter will be making leaps and bounds soon.
Hugs, Penny
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
Thanks everyone! It's so nice to be able to pour my heart out, get it off my chest and get all of this love and support. Feeling better today. Thanks again!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Sending my imaginary limo and crew over. The driver will be taking you to your place of choice to much needed break: perhaps the spa in AZ where they pamper you and feed your healthy foods, or a cruise or ?
The crew coming over with the limo driver will be taking care of things at home.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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