Caregiver in need

    • Anonymous
      December 31, 2006 at 2:35 pm

      Sorry it has been so long since i posted. Been real busy. My Mother got GBS in Feb 2006. Almost a year ago. She is 78 yrs old and was very active. She was in the hospital for 8 months. I followed this sites advise and got her to Magee REhab in Philly. The BEST!!! She is now home. Can you believe 78 and survived ICU? Walking with a walker and getting ready for a cane. I stopped working, sold our home, moved in with Mom. We were 1 day away from being empty nesters. Our Daughter left for college the day after Mom came home. Now it has been 4 months 24/7 with her. I am going crazy. She doesn’t have much pain anymore and I have my annoying mother back. Thank you Jesus!! She is getting around better. Physically doing well. I think depression is setting in. Maybe some demintia. How can i handle all this without loosing my mind? HELP!!!

    • Anonymous
      December 31, 2006 at 3:01 pm

      Donna ~ you have been so faithful ~ thank you!! This is a huge time of change for all of you. What are your community resources? If you could find someone to sit with your mom for, say, 3 hours a week then you could do something “just for you”. When this disease hits a person/family life becomes very unbalanced because all of the efforts go into survival! You have all done that ~ now the mind/body is seeking balance again. Maybe a good place to start asking questions would be at your local senior center. Do you have a YMCA close by?

      I wish you the best in your search to make life better for all of you! 🙂

      PS ~ there is most definitely a grieving that follows after life as you knew it is forever changed. You could check with your local hospice group to find that kind of support.

    • Anonymous
      January 2, 2007 at 10:30 pm

      Hi Donna,

      As a caregiver this is very hard on the family. If you have anyone else that can pitch in and help out, let them, you need a break too.

      What is going on with your Mom that makes you think she has dementia?
      Why not speak to her Drs about it and let them talk to her and test her. If she is on meds for pain, it could be the meds making her brain not work properly.

    • Anonymous
      January 3, 2007 at 7:07 am

      Brandy – Thanks for your reply. My mother doesn’t want anyone else to come into the home to help care for her. She is 78 and expects me to do it all with no help. Every time I leave the house, always with her safe, she wants to know where, when, how and with whom I am with. Like when I was young. The dementia is selective. Maybe not so much dementia but a control and power thing. I do need to talk to someone. I was going to try therapy but can’t afford it. I am logged in with a caregivers support group, but somedays that doesn’t help me thru things. I am getting depressed too. I think mom is alittle depressed too. I can’t let this effect my marriage. I am taking mom to the dr for follow up at Magee and will ask for a social worker or something. She asks me the same thing over and over again. She is starting to get meaner and her words are very hurtful. Is this dementia or just her.
      What should I ask the Dr.? How do they test for dementia? How do they test for depression? Thanks again Brandy fellow NJ resident.

      [QUOTE=Brandy]Hi Donna,

      As a caregiver this is very hard on the family. If you have anyone else that can pitch in and help out, let them, you need a break too.

      What is going on with your Mom that makes you think she has dementia?
      Why not speak to her Drs about it and let them talk to her and test her. If she is on meds for pain, it could be the meds making her brain not work properly.[/QUOTE]

    • Anonymous
      January 3, 2007 at 11:17 am

      Hi Donna,

      Dementia is Alzheimers I believe, someone correct me if I’m wrong. Mom would need to see a psychiatrist who specializes in that. Depression can be diagnosed just by her talking to a psychiatrist.

      Sometimes meanness does come along with this illness. You can’t let her rule your life, I know this is hard on you and please like you said ,don’t let this affect your marriage. Let her ask all the questions she wants, just get out and do what you have to do to keep sane. Taking care of someone you love who is ill is not an easy job, I know this. The social worker thing is a great idea, they are trained to help in these areas.

      Just know you are not alone in this and we’ll try very hard to keep you emotionally uplifted whenever we can.Take care of yourself please.

      From a fellow NJ gal ( Bogota, Howell, Barnegat and back up to North Jersey April 2006 again now in Hackensack)

    • Anonymous
      January 3, 2007 at 8:31 pm

      Good luck with your mother, Donna. My fiance is quite dependent on me too, but after two years of this GBS stuff, I’m almost ready to start having some kind of social life again, even if it’s only very limited. I love Ben more than anything in the world, but he can drive me batty at times too.



    • Anonymous
      January 3, 2007 at 9:49 pm


      Dementia is not necessarily caused by Alzheimer and may be treated by medication. Hopefully you discussed all you mothers symptoms with the doctor. My mother didn’t have GBS but she was ill and became totally dependent on us. She moved into our bedroom and we lived out into the family room for two years +. I can sympathize with what you are going through. My mom could be very demanding at time and didn’t want any “outside” help. To make a long story short, we got a physicist involved. It helped

      You have to take care of your own health too. you need to make sure you don’t ware yourself out. Perhaps the physicist can help both you and your mom

      Keep in mind that there may come a time when you can no longer provide the care your mom will need. We had to face that situation. The only answer for us was Nursing Home. Hopefully you will not face the same situation.

      I’ll keep you, your husband and your mom in my prayer. Hang in there and never give up hope,

      Jim C

    • Anonymous
      January 4, 2007 at 11:40 pm


      Sounds like you have your hands full.

      Alzheimer’s is not the same as dementia, although has similarities. A good neurologist can help to dx either.

      I wonder if part of what you are seeing with your mother’s selective memory problems may be related to GBS, or to her medications.

      Many of us GBS survivors had months, and sometimes years, of short term memory problems that sometimes made us question if we had Alzheimer’s or similar. Just because your mother is older, doesn’t mean she couldn’t be having this same problem. Most of us eventually have our memory improve or return to normal.

      Medication can also have this effect. Medications of all kinds can act differently for older patients – many older people need reduced dosages of medications. Perhaps an adjustment is needed.

      As far as the meaness goes, sometimes people who become very dependant are frightened of the dependancy, and ironically, they show it by acting out towards the person on whom they are depending the most. Wanting to know where you are, with whom, etc. goes along with this.

      It also sounds like your mother needs more outside contact. Ironically, this is probably what she will resist at first. Have you thought of encouraging her to join a volunteer group of some kind? Many older people, especially when they have suffered an illness or injury, start to get more and more isolated socially.

      My own mother was having this problem after my father died, and she was also feeling lonely. I finally was able to talk her into trying a volunteer group near her home where other older women gather once a week to make dolls that are given to sick children in the local hospitals. She enjoys this a lot, and is doing something to help others. We all need to feel useful.

      Best wishes and please be patient with your mother. You’ll find the answers you need, and we’ll be here to help.