Sister with MS can't get into bed to sleep

[Deprice]

My sister has had MS for 18 years.  She is has two sons 16 and 18 years old.  Her husband is currently divorcing her and for the most part has always been in denial regarding her MS.  She is not well off.  I do not believe she takes her meds as needed.  I have continually tried to get her to get state aid.  She lacks follow through.   Her home is extremely unsanitary.  My brother ensures they have food on a weekly basis and I fill in when needed.  We talk via telephone once a week until about a month ago.  I now struggle to get her to answer the phone.  Her sleep habits are extreme.  She is awake all night and usually wakes at 8 or 9 p.m. at night.  It had been two weeks since our last conversation on the phone.  I made the trip to her home.  At 12:15 p.m. I found her sleeping in her wheel chair with several pillows piled on a table and blankets wrapped around her.  She did not look well, in fact she look very old for her 50 years.  She tells me she can not manage to sleep in bed any longer as it is too painful.  Also she tells me she has bed sores.  She does not manage her boys well and they seem to take care of her more than her taking care of them.  I asked her to make an appointment at her neurologist and have the state transportation available to her pick her up and delivery her to his office.  (I do not know his name or I would call him).  I told her I would meet her at the doctors office to help her.  She said she would make the appointment.  I gave her one week to make the appointment and let me know .  It has been 1 week I have not heard from her and she is not answering my calls.  I am looking to go back over to see her.  I feel as though she needs assisted living or 24 hour nursing care.  I am certain she will reject this suggestion, but feel she may need medical attention for the bed sores.  What can I do?

[Sparkysarah]

I think that Lulu's post is wonderful and has given some really good practical suggestions. Beyond what she has suggested..I am not sure what the answer is. If you can get your sister to take responsibilty for herself and get to the doctor's appointment this is the best route. If this does not happen, then I feel that you will need to take the much harder route which she may not recognise as support, and that is to get social services involved for her own sake and the kids.

Sometimes people find it very very difficult to ask for help and theya re scared of losing control of their life even more...however there reaches a point if the body is in decline (and bed sores are a serious health concern which require regular checking and dressing) when the responsible thing to do is to reach out to someone else to help.

You are a  very caring sister and obviously love her very much..it is hard to sit back and do nothing and tough love requires strength and backbone. Let us know how you get on and all I can say is well done..you are doing all that you can do.

With love

Sarah x

[Lulu54]

Hi Depiorce.  I am glad you found us here.  Perhaps between all of us we can help to brainstorm some possible solutions for you in approaching your sister.

Depression and denial are two of the biggest problems living with MS or living with someone who has MS.  I am so sorry to hear that her husband cannot take the pressures of living with a person with chronic illness.  But we can't change the fact that he is a wimp and didn't really mean the vows "better or worse."

Your sister's habits could be attributed to depression.  It can be hard staying in a routine of daily activities when there isn't much to that routine outside of sleeping and eating. Almost all of us MS patients deal with depression and I would guess you sister has that problem, too.

As for sleeping upright - that is not unusual.  We have quite a few people here who sleep in their recliners instead of a bed.  Laying flat on a mattress does hinky things to the muscles in the body and can make sleep and comfort impossible.  If she does not already have one, you might look for a chair that she can use rather than her wheelchair.

Bedsores are a serious problem, and it sounds like you already know that.  My daughter's sister-in-law has advanced MS and ended up in the hospital and rehab for over 3 months because of an infection that set in due to bed sores.  She had several surgical procedures to remove skin and debris trying to tacklet these and she spent a long, long time having to be on her stomach.  Once they get infected they can be mighty difficult to heal.  

Her boys sound like they are making the best of a horrible situation.  If you or someone in your family can help to monitor them, it would be a good idea.  They need to have a life, too, outside of taking care of their mom.  Nutrition, school and home health/safety are the main areas that probably need to be addressed for them.

It sounds like your sister would benefit from having a social worker assigned to her.  They can help to navigate some of the day to day problems such as home health care, housekeeping and transportation to the doctors.  Start with the local NMSS chapter and ask for their guidance.

While your sister is still able to do so, talk to her about having you or someone else who she trusts to be appointed with her medical power or attorney and perhaps her other POA needs, too.

Finally, you don't know the doctor's name, right?  Next time you are at your sister's home be the nosey relative.  Open those medicine cabinet doors and look for her pill bottles.  The doctor's name is on the prescription labels.  If there are more than one set of doctor names be sure to write them all down.  Then start calling until you connect with the right one.  You probably know that privacy laws will not let them tell you even if your sister is a patient there, so you will have to approach this from a different angle.  Tell them your sister is Dr. X's patient, you are her sister, and have serious concerns about her welfare. Don't try to discuss her immediate health because they are legally bound to not discuss this with  anyone who doesn't have her permission.   Schedule the appt for her and be sure to meet her there.  Or you may have to request an appt to come and see the doctor first to outline her situation before she sees the doctor.  

Thank you for being concerned enough to reach out to others for ideas to help.  We all need all the helpers we can get.  I hope you will check back in and let us know how she is doing (and you, too!) and if any of these ideas work out for you.

be well, Lulu

[HVAC]

Your situation sounds hard I am no professional but I am guessing depression is playing a big role in her lack of motivation. Some local chapters of the National MS Society have people who can come in and kind of acess what the needs of a person are.

Unfortunately if she is not willing to help herself at all it is little you can do. The boys should be looked after.

Alex