A different family story

Difficult family
My problem is my family is small I have a daughter who lives on the west coast, I’m in NJ. I got GBS last 7/17/16. My daughter was visiting for 21 days, she just returned home with here family and 4 days later I went down, literally with GBS. I was ambulanced to the hospital, 5 days of IVIG when they finally figured out what I had. We talked by phone but no return while I was in the hospital or the 3 weeks of my stay at a rehab facility. I should add the my daughter is married with at that time a 6 month old baby who would have had to make the trip with her. She doesn’t work so it was possible but I tried to stay positive with all this.
In November I had a relapse and a Sepsis infection. Back to the hospital for almost 3 weeks, 10 days of intensive care. Of course back to the rehab facility for 3 weeks. My daughter, son in law and grand son came to NJ to bring me home for Xmas last year and Etsy for 6 weeks because I needed daily trips to the infectious disease dr for antibiotic injections which required me to be there from 2 to 3 hours.
Now that I’m 10 months out from the last hospital trip I have gone from being paralyzed from the waist down to walking with fore arm crutches. I’m almost to a cane and I can get around my house well enough that no one has to be with me over night
My daughter listens on the phone but somehow is resentful about all this. I try to explain how lonely this all is, she replays oh yes I know. How horribly slow the healing is, oh yes I know. She and her family are coming east for an event on her husbands side and she is planning to visit for 4 days afterward with my grand son. I am trying to explain that the house isn’t up to what I normally would keep it. Just the fact that I’m worring about the house being messy is very stressful.
She totally blows up. She tells. E last summer when she was here for 21 days, when she went home she was so angry with me she was never going to talk to me. I asked her if she has Evers read about GBS? She flips out and sat of course. I asked because I obviously was coming down with this during that visit. Then she starts yelling that she and her husband spent 6 weeks here taking care of me. I thanked them then and again thanked them but I did say it’s 10 months later I could use some help please. She hung up on me after saying her friends Mom had cancer and they never had these types of personal problems.
Needless to say I’ve cried my eyes out. Like I started this isn’t the great family story. I just don’t know what to do. Can anyone help. I have started to see a counselor but only one time so far. I know the stress isn’t good for GBS. I appreciate and help, ideas or books to read. Thanks. imageimageimage is

Oh dear. I’m sad that you are feeling that your daughter has let you down. I think your best bet is to see, possibly with help of a professional how to change your mind set. You are using up so much well needed energy on negative things which you need to get your body back to normal.

Our children have their own lives to live and society as it is today expects we seniors to help ourselves…which we can do with the power that positive thinking gives us.

I’m sorry but nobody wants to be around a moaner or a person who can only talk about their illness. It’s not a nice thing to hear but it’s the brutal truth.

I’m 2 1/2 years into recovery and now taking on the challenge of loosing weight which although hard is making walking so much easier.

GBS has given me such a surprise of what I’m capable of doing. Each challenge accomplished is a phenomenal plus to my self esteem and hopefully my ability to help others.

You have a choice. You can rid yourself of the negative thoughts and begin to concentrate on all that you have accomplished so far…and it ain’t peanuts!!! Concentrate on what you can do and what your working on. Set yourself obtainable goals.
Keep a diary with all negative thoughts banned. Read it often.
Set yourself new goals the minute you have reached a goal.
Use your new found wisdom to help others. Smile as much as you can.

Good luck :wink:

Thanks so much for your words of wisdom. I do agree my expectations were not met setting up my disappointment. I am so happy I have this group for the support and help of people going through similar and many times more difficult life events then myself. So thanks for the direction. As difficult as it is I do need to smile, recognize what I have worked hard to accomplish in my recovery. I love the idea of writing down my goals, accomplish and set new ones as well as helping others. You have sure helped me. Sometime I just need a push in the right direction. I appreciate so much the help in getting my mind set back to my physical as well as my emotional recovery.
I wish you lots of luck with your weight loss and walking goals. Who knew how hard it is or what is required for each step we humans take. I know I’ll never take walking for granted I just wish it didn’t take so much thought. Thanks again, you’ve been a big help.

Oh my goodness Reggieness, what a wonderful reply to receive. You’ve made my week!

When I received my diagnosis I latched on to the phrase “temporary paralysis” with accent on the temporary bit.

It was first when I found this amazing website that I really started finding out what GBS was all about. What absolute heaven to talk to people who could answer my questions, who knew the joy of being able to wiggle your toes, put one foot in front of another without too much trouble…and the list goes on and on and on.

One well meant person said to me…in a years’ time you’ll forget all this happened…as if !!! It’s affected me for life but in the most positive of ways. I hope you will also find this happening to you.

In the meantime remember that every goal reached is your own Mount Everest. Do keep us informed. I’m glad that you’ve decided to keep a diary/journal.

My journal began when I was able to hold a pen and the penmanship from then until now tells the success story.

Thank you for your kindness in writing back. It’s really appreciated. I’m so glad that I could be of help.

I’d just like to add that I’m still going to rehab training with a small group twice a week. We all have different illnesses to sort out. I find it a great help both physically and socially.

Mary

Oh my goodness Reggieness, what a wonderful reply to receive. You’ve made
my week!

When I received my diagnosis I latched on to the phrase “temporary
paralysis” with accent on the temporary bit.

It was first when I found this amazing website that I really started
finding out what GBS was all about. What absolute heaven to talk to people
who could answer my questions, who knew the joy of being able to wiggle
your toes, put one foot in front of another without too much trouble…and
the list goes on and on and on.

One well meant person said to me…in a years’ time you’ll forget all this
happened…as if !!! It’s affected me for life but in the most positive of
ways. I hope you will also find this happening to you.

In the meantime remember that every goal reached is your own Mount
Everest. Do keep us informed. I’m glad that you’ve decided to keep a
diary/journal.

My journal began when I was able to hold a pen and the penmanship from
then until now tells the success story.

Thank you for your kindness in writing back. It’s really appreciated. I’m
so glad that I could be of help.

I’d just like to add that I’m still going to rehab training with a small
group twice a week. We all have different illnesses to sort out. I find it
a great help both physically and socially.

Mary

Well Mary, it’s great to meet you I’m Regina, my friends call me Reggie. I
hope you will call me Reggie too. I will keep you posted on the journal.
I’ve never done one before but I know the GBS has affected everything. Like
you said, the handwriting itself will be something to follow.
I know what you mean with the temporary. The longest temperature
imaginable.
Thanks again. You have been a tremendous
help. I am so happy to have this wonderful group of people to turn to for
help.
Enjoy the rest of your weekend
Reggie

Hi, I am new here and newly diagnosed with CIDP. I am so sorry about your daughters reaction, unfortunately at times we find ourselves with family and friends who don’t cope very well with certain types of information or needs from their loved ones. A few years ago I was also diagnosed with a progressive form of MS and my family literally told my children and friends I was faking it, I was seeking attention. It wasn’t with the support of my family I learned to adapt but with the support and love of friends; they became my family and my support, in ICU, during various treatments that were literally trial and error. I sincerely hope your daughter comes around but sometimes , some people don’t have the coping or empathy we would wish them to show us. I hope things get better for you and if your daughter can’t accept this please don’t force it, it will drive them away. Lean on those around you who are capable of giving you what you need. Spiritually emotionally and or physically. Best wishes
Kris

Hi, I am new here and newly diagnosed with CIDP. I am so sorry about your
daughters reaction, unfortunately at times we find ourselves with family
and friends who don’t cope very well with certain types of information or
needs from their loved ones. A few years ago I was also diagnosed with a
progressive form of MS and my family literally told my children and friends
I was faking it, I was seeking attention. It wasn’t with the support of my
family I learned to adapt but with the support and love of friends; they
became my family and my support, in ICU, during various treatments that
were literally trial and error. I sincerely hope your daughter comes around
but sometimes , some people don’t have the coping or empathy we would wish
them to show us. I hope things get better for you and if your daughter
can’t accept this please don’t force it, it will drive them away. Lean on
those around you who are capable of giving you what you need. Spiritually
emotionally and or physically. Best wishes
Kris
Thanks Kris

Being able to share my problems with a group of people who understand
has already been a big help. I appreciate your understanding and good
suggestions about being too pushy. Thanks for responding. I’m happy to have
your support
Reggie.

Perhaps your church group has something called a Stephen Ministry where you can meet with a Christian counselor once a week to listen to you and be an advocate for you. You don’t have to be a church member to reach out to the Stephen ministry program so if your church doesn’t have one, you can try other churches to see if they offer the Stephen Ministry.

Next time you talk to your daughter try talking to her like you did before GBS or CIDP and ask her about herself, her kids, your grandkids. Make the call about her and them and not you and what you want and need. Maybe send a thank you note for all the time they have spent with you already.

Stay focused on your health and getting better. You are bigger than this disease! Be stronger than you think you can be. Be more disaplinned at rehab than you know you are. Be more faithful to your God in prayer.

Perhaps your church group has something called a Stephen Ministry where
you can meet with a Christian counselor once a week to listen to you and be
an advocate for you. You don’t have to be a church member to reach out to
the Stephen ministry program so if your church doesn’t have one, you can
try other churches to see if they offer the Stephen Ministry.

Next time you talk to your daughter try talking to her like you did before
GBS or CIDP and ask her about herself, her kids, your grandkids. Make the
call about her and them and not you and what you want and need. Maybe send
a thank you note for all the time they have spent with you already.

Stay focused on your health and getting better. You are bigger than this
disease! Be stronger than you think you can be. Be more disaplinned at
rehab than you know you are. Be more faithful to your God in prayer.
Thanks so much for your rely. I’ll definitely look into the Stephen
Ministry I’ve never heard of it, hopefully it will help in my story I
gave the fast version. In our conversations I always ask about what is
going on in her life, how’s her husband and of course my grand son I like
hearing what’s up in their lives.

I like the idea of a thank you note. I have thanked them so many times for
anything they have done, then to have it thrown back at me is amazing.
Maybe they will be able to read my gratitude in a note.
I do know just sharing my problem with this group has been helpful.
Thanks for your help. Reggie.

Good morning Reggie,

I’d be honoured to call you Reggie, Reggie.

I’m so glad to hear that you are going to begin a journal. I went to eBay and found a pretty one. I could see that the journey I was on was too important NOT to document. On my first page I have printed my motto…Persistence Patience Positivity

The thicker the pen you can get the easier it is to write with until your fingers get back to normal.

I was always spilling food at meals so again I went to eBay and got a dentists’ bib clips. I put this on tea towels and oh boy did it save a lot of laundry.

A good way of training up the muscles in your hands is by ripping up all carton boxes from food, Kleenex, toilet rolls etc and cutting up plastic boxes etc with some big scissors. Not only are you saving space in your rubbish bin you are giving those muscles a good old work out.

I’m an avid cross stitcher so it was imperative to get the use of my hands back asap. Also I couldn’t put on my earrings in the beginning and I NEEDED to be able to do that.

I was diagnosed 1 April and I got my xstitch cards done in time for Christmas…11 of them. I put it down to pure stubbornness.

I found a pick up thingy stick ( don’t know what they’re called)invaluable because you are always dropping things.

If possible get a physio to teach you how to get up if you should fall. It gives great peace of mind learning that although I must say the getting down onto the floor was almost harder than the getting up.

Because you are less mobile watch your intake of food. I was eating the “right foods” but the portions were too large, so be careful. The difference I’m experiencing after loosing just 4 kilos is amazing.

I had a lot of “handicap” things for the kitchen which were a waste of money. I had a good physio for my hands so got back their use within 6 months. She used to give me a small plastic box full of plastic clothes pins. I had to attach them around the 4 edges of the box using just my thumb and index finger…when I got good with that it was my thumb and long finger and so on. This can be done at home. I enjoyed it more than the squeeze things my daughter gave me …she lives in another country…because the clothes pins involve more dexterity.

I have training today and Friday. We have a wonderful medical system here in Denmark and all my training is paid for by the state because of the type of illness GBS is. I get around on my wonderful electric, 3 wheeler, metallic red scooter. I can walk in the shops so it is like my own little car. Here in Denmark we have bicycle paths in the cities and towns so I’m not in the traffic. It takes me 7 min. To get to my training Center and I just love it.

How are you doing getting up from a chair and making meals? How do you get your groceries?

My time is about 6 hours ahead of yours.

Keep smiling…

Mary

Good morning Reggie,

I’d be honoured to call you Reggie, Reggie.

I’m so glad to hear that you are going to begin a journal. I went to eBay
and found a pretty one. I could see that the journey I was on was too
important NOT to document. On my first page I have printed my
motto…Persistence Patience Positivity

The thicker the pen you can get the easier it is to write with until your
fingers get back to normal.

I was always spilling food at meals so again I went to eBay and got a
dentists’ bib clips. I put this on tea towels and oh boy did it save a lot
of laundry.

A good way of training up the muscles in your hands is by ripping up all
carton boxes from food, Kleenex, toilet rolls etc and cutting up plastic
boxes etc with some big scissors. Not only are you saving space in your
rubbish bin you are giving those muscles a good old work out.

I’m an avid cross stitcher so it was imperative to get the use of my hands
back asap. Also I couldn’t put on my earrings in the beginning and I NEEDED
to be able to do that.

I was diagnosed 1 April and I got my xstitch cards done in time for
Christmas…11 of them. I put it down to pure stubbornness.

I found a pick up thingy stick ( don’t know what they’re called)invaluable
because you are always dropping things.

If possible get a physio to teach you how to get up if you should fall. It
gives great peace of mind learning that although I must say the getting
down onto the floor was almost harder than the getting up.

Because you are less mobile watch your intake of food. I was eating the
“right foods” but the portions were too large, so be careful. The
difference I’m experiencing after loosing just 4 kilos is amazing.

I had a lot of “handicap” things for the kitchen which were a waste of
money. I had a good physio for my hands so got back their use within 6
months. She used to give me a small plastic box full of plastic clothes
pins. I had to attach them around the 4 edges of the box using just my
thumb and index finger…when I got good with that it was my thumb and long
finger and so on. This can be done at home. I enjoyed it more than the
squeeze things my daughter gave me …she lives in another country…because
the clothes pins involve more dexterity.

I have training today and Friday. We have a wonderful medical system here
in Denmark and all my training is paid for by the state because of the type
of illness GBS is. I get around on my wonderful electric, 3 wheeler,
metallic red scooter. I can walk in the shops so it is like my own little
car. Here in Denmark we have bicycle paths in the cities and towns so I’m
not in the traffic. It takes me 7 min. To get to my training Center and I
just love it.

How are you doing getting up from a chair and making meals? How do you get
your groceries?

My time is about 6 hours ahead of yours.

Keep smiling…

Mary

Wow Mary, thank you so much for your tips. Some even made me laugh. I’m not
wearing earrings right now due to the same problems.
I had my first round with GBS 7/16 and a second dance with GBS 11/16. The
second one in November was related to a Sepsis infection the doctors missed
during the first hit consequently I was in a wheel chair, paralyzed from
the waist down from July 2016 until March2017. I think getting the
infection cleared up was a big help overall but especially with my
recovery. I’m walking with forearm crutches and sometimes I only need one.
Things are improving but it’s so darn slow. Unfortunately I’ll be on
antibiotics to keep the infection out of my blood for another 1 to 2 years.
At least they figured out why my recovery was so slow.

I love that Denmark is good with health care coverage. I go back to the Drs
Tuesday and I think they will approve additional rehab. I didn’t realize
how important rehab is at a social aspect. I love you have the scooter. I
can imagine how helpful it is for getting around.
It’s horrible walking any distance with the crutches and painful.

I love the dental clips because I do make a mess. I cook myself and that
adds to the mess but my dog loves it. I had been using a grocery store that
does home delivery of groceries. It was a hugh help. 3 months ago my rehab/
PT was stopped so I started going to the grocery store buying small
amounts. I used the cart as my crutches. The ride around store scooter are
too hard to go from sit to stand. It’s easier to just push and roll. It
gets the job done and gets me out around people. Then I sleep really good
that night.

I knit and crochet, it’s coming back slowly but I love the idea of getting
my Xmas gifts finished or as finished as I can. I’m trying to do some
gardening but I look more like I’m rolling in the dirt. You hit the nail on
the head. Going from the floor/ ground to standing is almost as hard as
getting on the floor. I know I will never take a step for granted. Heck if
I’m out I have to ask strangers to tie my shoe sometimes. Fortunately
everyone is nice about it.

I love the idea of a pretty journal and the thick felt pen. Your motto is
the best idea. I will think of one for myself. It will keep me focused on
my journey and recovery both physically and mentally

Thanks so much for all your help with getting
reset on my journey of recovery. You are a kind wonderful person. And
please relay your hints and ideas. Heck if we each had dollars/euros? for
each thing we drop we would be rich women

Have a great day and a good work out at training. Thanks again for all your
help
Reggie

Reggie, there may be a way that you can get your daughter to be more attentive to your needs. I have seen this work. Remind her that your grandson is watching her, and the way that she treats you now is the way that he will treat her when she is in your place. The example she sets now will follow her through her life.

Maybe she will come to see that it is in her best interest to be nicer to you now. She has to give of herself before she is worthy to receive. I am not a church-going man, but I believe the Bible when it says that whatever she sows, that also will she reap.

Five hundred years ago Shakespeare, who seemed to know a lot about heartbreak, said ‘How sharper than a serpent’s tooth it is to have a thankless child’. Parents don’t generally expect to be thanked when they help their children through illness and injury, but they can fairly expect to be supported in the same manner when age reverses the roles of who cares for whom. I and your other new friends here hope you are successful if showing your daughter the right thing to do.

Jack Schroeder

Thanks so much for the approach. I feel like I’m walking on rice paper. I
also think I should print the Shakespeare quote on a tee shirt. No truer
words are spoken.
I love the conversation that little Peter is watching and learning and it
will directly affect his response in her lifetime. I hope she lets me talk
that long.
Thank you so much for the help. The opportunity to share and get responses
from this great group of friends who unfortunately, have and are surviving
this nightmare illness is a beautiful gift. Sharing my problem released
emotions I was keeping inside. Keeping everything bottled up inside was the
worst thing I could have been doing.
I had an appointment with my GBS Dr this past Tuesday and she told me some
people “get it”
(Understand), some people try to say they get it, some will never get it.
Unfortunately it looks like my daughter will never get it. She also told me
I can identify people that will never get it.
They start almost every conversation with “I get it”. They don’t, how can
they if you’ve never had GBS? Then it’s followed with “not everything’s
related to your GBS”. Ah, yeah, right now it is. Give me a year or two to
adjust.
My point is thank you so very much. I hope I can pay it forward to this
wonderful group of friends.
Have a great night, Reggie

First up, I have to ask what the 3rd blurry photo is that you are sharing ? I honestly can’t tell.

More importantly, what type of relationship did you have with your dtr, who doesn’t live in the same state that you do, Before the GBS hit? Are you privy to what is happening in her life given the fact she has a baby to care for 24/7 and lives in a totally diff State than you do.

Were you living alone and safely doing so before the GBS hit? ? GBS can be profoundly incapacitating and I can understand, from my own experience, just how scary it probably was because once the GBS begins it goes like gangbusters with loss of function on a daily basis. At some point, a plateau is reached and then the real work begins- learning to live with the after effects caused by the GBS, some of which are physical, some of which are mental. Some folks have more issues after the acute phase begins to reverse, esp upon discharge from any facility when the realization is you do live alone hits home, so to speak.

I assume you were living alone, independently, before the GBS hit like a runaway freight train. After release from the Hospital, was any eval done to see how safe you are in your home? Can you manage Activities of Daily Living on your own like dressing, bathing, preparing something meals, personal hygiene, cleaning your home, getting to appointments and the like?

While I am not siding with your daughter who clearly has issues re: the impact the GBS has had not only on you and your expectation that she be available to help you more but also how same impacted her life that may not translate well in her world, esp given the fact she has an infant to care for 24/7 and lives with her spouse in a different State.

I strongly encourage you to look into what services are locally available to you should you require more support in your home. If you feel you are Not Safe to live alone with the current restrictions you do have, and I by no means am downplaying the sequence of events that happened to you after the GBS occurred, all the more reason to check into supportive options available to you including Home Assistance and/or the possibility of perhaps having to move to a more safe, structured environment where there are people available 24/7 to provide assistance.
Are you safe and physically able to get your own meals and do a bit of tidy up after doing that. Can you safely bathe on your own? Who is cleaning your house for you if you are not able or up to doing so? Who takes out the trash, gets groceries in and pays your bills?

I suspect your daughter’s response now to your need to have her near by or with you for a longer period of time just may not be something she can do because she does have a young child and because she and her spouse with baby don’t live anywhere near where you do.

Rather than focus on her anger, which by the way is HER issue and Not Yours, I strongly encourage you to seek out info as to what is available to you in your own community. I’ve no sense as to how safe you really are in your home. All the more reason to request a qualified In Home review be done to evaluate just that aspect and to learn of/present you with community based options. Do you need a Live In person to be with you 24/7?

Are you able to get groceries and prepare your own meals in your own home? Do you need help with bathing and personal hygiene? Can you do basic cleaning in your home- vacuuming, floor and bathroom cleaning, washing dishes , doing your own laundry? How safe do you feel living in your own residence now given your current physical ability to take care of yourself and your home? If your answers to any of these questions is “yes” OR you just don’t feel safe to live alone, perhaps it might be time to look into alternative options as difficult as that might be. If you can afford to do so, can you have someone come into your home every day as a caretaker/housekeeper to provide you with assistance, do the laundry, prepare meals and the like? Is there a Meals On Wheel program in your community? Look into that aspect if meal preparation or grocery shopping is beyond you believe you can safely do.
Ask your MD for a referral for Community Services. Have that person come out to your home to do an In Home Eval. Be clear in what you can and can/t do in your home. Do you have something like a Life Alert necklace that you can activate should you fall and can’t get up in your home. What sort of In Home Rehab (PT) is being done to help re- build muscle strength to the degree that same can do be done or is there any community service available that you can get to, perhaps with a church group, a shuttle service or neighbor assistance to get to/from a place offering Outpatient PT/Rehab services?

Have a frank conversation with your physician. Ask for his/her help in speaking with someone who can provide you with info re: In Home services available where you live. All else fails, if you do not feel safe to live alone any more, ask for help checking into whatever Long Term Care facilities are available to you where staff are available to help you 24/7.

While you didn’t ID what type of Counselor you have / what service he/she provides or can connect you with in your community, I strongly encourage you to speak to your Counselor as frequently as you can as you may need a more intensive approach to be able to safely stay in your home. He/she could well be a source of Info as to what is available locally in your community. You may want to consider Psych assistance to help you deal with the aftermath of living with GBS 24/7, especially as there appears to be residual physical and emotional issues stemming from the life threatening aspect you had to face. Such assistance can be an invaluable resource in helping you deal with the issues you current face physically and emotionally as well as with the current relationship issue involving your daughter.

Do realize only YOU can decide what is best for You. There are options available. Sounds like you need assistance in identifying and sifting thru same to determine what is best for you. Your daughter is married with a baby who lives in another State. Her anger could well be her frustration at not being in a position geographically or personally to help you meet your current needs. Perhaps there are things going on her life that are simultaneously impacting her that she is having trouble dealing with which you know nothing about including issues in her marriage or dealing with being a relatively new mom and having problems processing issues concerning one or both of these things.

Please realize I am not excusing your daughter’s behavior by any means, esp her response to what seems like your desire /expectation that she pack up her baby, leave her spouse and move in with you to care for you in your home.

There are always options available. Speak to your Counselor re: being referred accordingly. Ask your MD what community options are available to you. Involve your friends and neighbors to see if they can help a bit by doing your grocery shopping or laundry, assuming you are unable to currently do so. Have a Social Service worker come out to where you live if you are not in a position to get to his/her office.

I also concur it is important to try not to dwell on your perception that your Daughter may be rejecting you. Perhaps there are aspects in her life you are not aware of that she is overwhelmed with.

It can’t hurt to write down your feelings. Do it on a daily basis for a while then review every weekend . Focus on what you can do, not what you can’t. You may well have more resilience than you know.

Next up is a realistic view of what Your options are based on what you current safety needs are in your current residence/living arrangement. I assume there are services available to you in your community but I can’t speak to what may be present in yours. If you have a computer or access to one, go online and check it out. If not, perhaps a friend can do so for you?
YOU need to ask the Counselor and your own MD as to what resources they can recommend or suggest to you or connect you with even if it only involves a name and phone number.

Either way, it is clear YOU need to act to address what is happening in your life, ID how safe you actually are in your home (a more thorough PT eval or Home Visit by an RN or other qualified healthcare professional would be a logical step). I am afraid this falls on YOU to do this or at least make the initial contact.

Ask your MD for a Home Visit by a suitably qualified person that can impartially examine same for you and make actual recommendations. Perhaps you may ultimately need to consider an Assisted Living arrangement for a while or at least have qualified personnel come out to eval you if you are physically unable to manage or get anywhere on your own. Home Health Aide assistance may also be an option for you as well if you need help with personal activities like dressing, showering/bathing, cooking, cleaning, driving you to appointments etc.

Your message didn’t say if there were any other Family members or friends available locally to provide you with some assistance. If there is, reach out. If there isn’t, all the more reason to actively look into obtaining some assistance. Seeing a counselor is a good initial step but it sounds like you may need more that what that person can offer.

I am sorry to hear of your situation. Your posting sounds like your daughter’ statements, behavior and actions have made it clear she does Not/is Not in a position to provide you with ongoing in-person assistance. Time to reach out for Community based resources. Your Counselor and MD should be able to facilitate that for you or at the least refer you to resources that can help you sort out your options as to what you can/can’t do safely in your own home.

Best wishes as this is a hard road to have to manage alone. All the more reason to reach out for assistance sooner rather than later.

Are there any support groups in your area? Have you checked out any online GBS support groups where it doesn’t matter where one lives in order to participate? This one is a start if you are curious to find out how others managed following the acute phase of the GBS they had and what helped/worked the best for them once the acute phase had runs its course.

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Thanks for taking the time to write. There is so much that goes into finding a path through this disease/life change, and for me it does get overwhelming.
Our relationship for a mother/daughter has been really good. There does come a time roles do reverse and a supportive ear is helpful. I’m not the best typeset so please bear with me.
My overall problem in hind site was not being heard. Unfortunately for my daughter she is an only child, distance, lives, etc. I though it was ok to share my frustrations, I was experiencing. I never would have wanted her to change anything just a sympathetic shoulder to lean on.
Sharing my story here has been a wonderful help. Maybe just venting with people experiencing the same health issue was the help I needed.
I do know I had not been viewing the shock of having her mother knocked down so alarmingly hard and fast had to be equally difficult for her. As with everything in life, live and learn.
My issues were for emotional support which I have loved being there for her throughout her life. This is the first time for role reversal and I am learning many families struggle. With love everything can be worked out
Thank you for your concern for my medical situation and needs. God has blessed me with great neighbors and doctors. Being 14 months into this the slowness of the recovery still amazes and frustrates me.
Many of the replies I received were to help others, become active outside. I started walking to the corner and back with a neighbor and today we made it around the block for the first time, forearm crutches and all. One sad thing is she won’t talk to me on the phone and I couldn’t share this with her, I normally would.
I’m not saying I’m perfect. I just need some patience and a sympathetic ear. I certainly realize and know what a great Mom she is, so I’m not talking about conversations all about me. I love hearing about her, her husband and the baby’s lives. I’m happy with a hey Mom I’m busy today but I wanted to say hi and I love you. I love that our conversations always make me smile hearing about life in general. But if I’m having a rough day don’t blow me off with yeah I know. Just some understanding.
Thanks you for taking the time for responding. I’m going to now take some advise from a response I received and bring another neighbor one of those adult coloring books and colored penciles. She’s recovering from hip replacement and is bored
Recovering from GBS has made me a master of finding something to do. Hopefully she’ll find enjoyment from the visit and her creativity.
Thanks again, Reggie.

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