It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board

Stuck between a rock and a hard place!


Post New Thread   Reply Reply
LinkBack Thread Tools Search this Thread
Old 07-15-2017, 01:11 AM   #1
Rosebud45
Newbie
(female)
 
Join Date: Jul 2017
Posts: 3
Rosebud45 HB User
Stuck between a rock and a hard place!

I am posting as a mother with a daughter who was diagnosed with RRMS about 6 years ago. She has not been doing too well over the last 18 months and has completely isolated herself. She is seeing a psychologist and a physio but seems to be very unwilling to take their advice on board.
She stays on her bed most of the time and is therefore getting weaker. I think even the physio is getting fed up with her. She still has strength but doesn't seem to want to get stronger.
I feel bad as I am probably enabling her to behave like this by doing too much but I can't let her starve.
I have tried talking to the doctor but they need her permission to speak and I don't think there is a lot they can do. She has been on anti depressants which made her worse. So I feel we have hit a brick wall.

Has anyone got some advice ?

Thanks

 
Reply With Quote
Sponsors Lightbulb
   
Old 07-15-2017, 05:55 AM   #2
MSNik
Senior Veteran
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 11,246
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Stuck between a rock and a hard place!

Hi Rosebud,

You are in a tough position. Relapsing Remitting MS should mean that she has periods of good days/ weeks. Is she not having any good days where she feels better?

Unfortunately, having MS can get to the best of us but allot of dealing with this disease is our mental state. For me, I force myself to work several jobs, socialize with my peers and colleagues and even get myself to the gym several days a week. This prevents me from sitting around thinking about how lousy I can feel on certain days. But, not everyone has this ability. It sounds like your daughter may be dealing with more than just having MS..something else may be on her mind which is causing depression and her lack of will to do anything.

Obviously she is under the care of a physician and you are limited in what you can do; however, I would be very aware of not enabling her. If you force her to do certain things and not make it easier, she will have to do more for herself. In the meantime, does she have friends who can get her interested in getting out and doing things?
If things get really bad, you do have the ability to get social services involved. You can pursue this from a concerned standpoint and force her to get the help she needs. I hope it doesnt come to that.

Try talking to her. Get her to read this board and maybe talk to us anonymously...ask her how you can help, what she needs...but dont give in if you think her requests are not legit.
Good luck...and come back and talk to us anytime!
__________________
RRMS- dx 05

 
Reply With Quote
Old 07-15-2017, 06:59 AM   #3
MSJayhawk
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 9,956
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Stuck between a rock and a hard place!

Rosebud45 ,

Welcome.

Isolation only feeds a cycle of depression which feeds onto itself. Staying in bed will only continue to weaken her and intensify the effects.

Unfortunately, your daughter has to make a decision to get up and get going. Literally, if you do not move it, you lose it. For me, I experience bad cycles of MS, but that is part of the MS life. If we do not get up and move, we will indeed worsen our physiology. This is all interconnected to our mental state.

Perhaps she would benefit by chatting herein? The local MS societies and associations also have social gatherings. Local temples and churches also often have social outlets.

Your daughter is probably also grieving. The grieving process of losing that which is normal. That is, her pre-MS normal. Redefining what is "normal" and free of any and all pity from self and those around one is an important step towards getting better. MS is not curable, medications are not absolute and may be ineffective. If her anti-depressants do not work, a change might be needed, or at the very least, an adjustment in the medication dosages.

I do not know if you have a dog or she has a dog. It has been proven that dogs can have an anti-depressant effect which are more effective than anti-depressent meds.

Personally, I have a "check-list" of things to go through each day. My list is variable. That is, on any given day, I will have a minimum list of activities or chores to do based upon how I am doing.

I can understand what you are experiencing. It is difficult to stand by and watch things go downhill. Thank you for sharing. I hope that you can get a resolution. I will keep you and her in my prayers.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 08-06-2017, 01:53 AM   #4
Rosebud45
Newbie
(female)
 
Join Date: Jul 2017
Posts: 3
Rosebud45 HB User
Re: Stuck between a rock and a hard place!

Thanks folks for your helpful advice. It certainly is a catch 22 situation and I have tried everything in my power to get her moving and doing but she just seems stuck mentally and physically. She has shut out all her friends and doesn't want to see anyone that knew her pre ms. I suppose I can understand that in a way as they are all getting on with their lives ,careers ,marriage, kids etc.

We do have a lovely dog but she is not interested so that is another dead end!

I have started to get a bit tougher for instance just leaving the house and telling her lunch is in the fridge help yourself. But when I came home she hadn't eaten all day. I know she is manipulating me but really am at a loss as what to do next. She is behaving like a sullen child but she is an adult.

I have been in touch with social services but did not get anywhere. There is so little money that the waiting time just for an assessment is about 4-5 months and if you have got savings over £16.000 you have to fund yr own care anyway. She is paying for a Carer to come in three times a week which does help but means she is doing even less and less

I believe that she is scared , anxious but stubborn. The counsellor who I saw mentioned "secondary gain" which I looked up - she may unconsciously feel that if she gets stronger etc she will loose the attention she is getting. This concept does make sense. However now that her muscles in her legs have atrophied her walking and balance has got worse. She hides behind her symptoms , it is so much easier for her to blame everything on the illness rather than make the effort to be proactive. I am desperately sad for her but also totally frustrated and at the moment all I can see in the future is a depressing care home. She does have her own apartment which she let for a year. It is now standing empty and she keeps on saying she wants to go back . She will probably need someone popping in twice a day to help which is ok. But she keeps on changing her mind . Last December she said she was going to move out in the New Year. .... We are now in August and nothing has happened. I have come to a point in my life that I almost feel like packing my bag and moving out myself!!!

Thanks for taking the time to read this long rant. Any suggestions?

 
Reply With Quote
Old 08-06-2017, 04:52 AM   #5
MSNik
Senior Veteran
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 11,246
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Stuck between a rock and a hard place!

I feel so bad for you...its very hard being a caretaker. I myself have MS and am a caretaker for my own mother...who is also trying to take care of her husband who has Parkinson's disease. Its a vicious cycle and probably what keeps me from slowing down- but at the same time it is difficult not to be resentful at times, as I have zero time to take care of myself.

Can you make a plan to get your daughter back to her apartment? It may have to be "tough love"...but it sounds like if there is any way possible to get her out of your house (so you stop feeling as you do) and back into her own place (with help and a support system in place) might actually give you the ability to start being a mom again and not being a full time place for her to crash and take things for granted. Being in her own place will probably be very difficult, which may force her to start caring again...

You cannot be any good to yourself OR her as long as you feel like you are enabling her, which you are...you cant make her do anything as long as she knows she has you to fall back on. But, if she were in a position where she needed to do some things for herself- I dont think she would actually stay in bed 24/7. If she has someone popping in twice a day as you suggested, she may be dependent on them for some things, but she may also find out that she can do more than she thinks right now.

Tough love is one of the hardest things anyone will ever do, but it might save her. Forcing her to take small steps towards independence might remind her that she can do all these things she currently doesnt have to and therefore isnt trying to do. There is only one way to find out.

This has to be really hard on you. Its obvious you love her with all your heart...but you cannot keep an adult person in your home and feel responsible for her all the time, especially when you know that she isnt helping herself. Is there a doctor or an agency you can speak with to help you set up some inhome care?

I wish you the very best. Please let us know how things are going.
__________________
RRMS- dx 05

 
Reply With Quote
Old 08-06-2017, 08:51 PM   #6
MSJayhawk
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 9,956
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Stuck between a rock and a hard place!

Rosebud45,

As she is a grown adult, it is difficult to effect a change without her cooperation. Given your national healthcare differs from that of the US, I am unsure if your daughter can get access to a counselor or a rehabilitation program.

I know that it is frustrating. As she has someone coming thrice weekly, I wonder if this person can encourage her to become more active or to start a regiment of stretching.

Unfortunately, as she is an adult, she has to make important decisions about her life and activity levels. I would hope that her doctor would encourage her as well. Just keep encouraging as best you can while avoiding the "nagging" persona. People with chronic illnesses all too often become dismayed with their predicament. The process devolves into a perpetual pity party. I really hope that you can be a source of encouragement for your daughter to positively respond.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 08-11-2017, 07:53 AM   #7
Rosebud45
Newbie
(female)
 
Join Date: Jul 2017
Posts: 3
Rosebud45 HB User
Re: Stuck between a rock and a hard place!

Thank you for your advice. I probably do make things worse by nagging and realise that has got to stop - dont think children (of any age) really listen to their parents when they nag.

I think that her doctor and psychologist are beginning to give up on her as she has such an " avoiding" character . Anything that is in the least bit challenging she finds ways of avoiding. She has done this for so long that I think it has become her norm. These next few weeks will be interesting as I have set a date for her to decide - is she going to her flat and do what she wants to do? or is she staying here but abiding by house rules ?

I do feel particularly trapped at the moment but realise this food issue is similar to a child manipulating its parents by not eating. Today she told me that she did not want to leave her room for some flimsy reason and I told her that I wasn't going to provide room service anymore - so the result was - she hasn't eaten. That of course makes me feel guilty as she is very underweight anyhow. But I am not going to give in otherwise like a child she will use it as a tool.

Never thought that I would be going through all this at my age. But I am trying to take one day at a time.

Will keep you updated !

 
Reply With Quote
Old 08-11-2017, 08:45 AM   #8
FlyRed
Newbie
(female)
 
Join Date: Aug 2017
Location: Warrensburg, MO 64093
Posts: 4
FlyRed HB User
Re: Stuck between a rock and a hard place!

Rosebud45: my sister had severe diabetes, fibro, and RA. She was miserable and slowly turned herself into a shut-in. She died at 44 years old from an "Accidental" overdose. We family members know it was not an overdose. For years we tried to get her up and out, but she gave into it and began the same vicious downhill cycle you describe. I am not trying to scare you, but perhaps you can share my story and scare her out of bed. If not, then yes, you must leave her on her own for as long as you can. She has to take care of herself if she is at all capable. Get her a walker and leave it by the bed. Here we can get a walker from the American Veterans group for twenty-five dollars and keep it as long as needed. You have to be strong for her, but not in a way either one of you will enjoy. A big hug to both of you.

 
Reply With Quote
Old 08-11-2017, 10:40 AM   #9
MSJayhawk
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 9,956
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Stuck between a rock and a hard place!

Rosebud45,

One day at a time is all we have. If she is under your roof, then there has to be an understanding. Food is often used as a tool dating to childhood control issues.

That said, when I was bedridden, I ate in bed because I was unable to move about freely. But, as soon as I was able, I made it to the table to eat. I also used a power chair and I was stretching daily. My doctor had me start using a passive exerciser for my legs.

In the end, however, it is up to the individual MSer to push themselves forward. Otherwise, it can spiral downward. Another factor is your daughters social circle. Has she rejected them or have they left her? The Royal MS Society there might be able to assist you in coaxing her out of the room and into some social activities. Adult daycare might be possible if it is in your area.

While confined to a bed, I had a TV (it zeroes the brainwaves which is good for mental rest), I read books, had my internet, and I had my crocheting. There are plenty of things she can do while on her own. Lastly, I would encourage you to share this site with her. She can lurk and read until she is ready to share.

__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Reply Reply




Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 01:06 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2017 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!