Tuesday, March 24, 2009 Question asks

Q: I know someone with advanced MS and her family isn't properly taking care of her. What do I do?

My friend is 40 with advanced MS. She can no longer walk and mentally, she is quite slow. Her husband has been taking care of her at home with their son. At first I was very impressed by the way they took care of her...Her husband stays at home with her during the day and works at night and her son works during the day and stays home every night. But I've noticed they totally disregard most advice given by the doctor. She eats way more than I do and usually she eats fattening fast food. She has gained A LOT of weight, but blames it on her pills. She has the worst attitude and she makes her family feel so guilty. (She thinks their lives should revolve around her.) She has lost most of her mental capacity.... she sits in a chair and watches tv all day, most of the time she is half asleep....(some times she will watch cartoons.) and she NEVER exercises.

Recently, she got bed sores on her rear from sitting in her chair all day and the DR said to keep her off the sores....in addition to her rear she has also scratched a hole in the bottom of her foot..down to the bone. (I have no idea why??) Well, she told her husband she wants to watch tv and sit up....so he ignored the doctor and sat her up. ALSO, she asks him to bend her leg so she could have her foot (she likes to sleep in the chair all night and scratch her foot) and HE DID IT!! So her rear kept getting worse and she kept scratching at her foot and bleeding everywhere. She ended up needing surgery on her rear to fix the wounds that developed from the improper care...it was infected....and they cleaned up her foot. While at the hospital they told her she is now diabetic. I asked her husband why he put her in her chair and gave her her foot when he knew it would hurt her and he said, "She is an adult, she can make her own decisions. Besides, if I don't do what she asks she keep me up all night about it."

She was sent home from the hospital with strict instructions not to sit up, she has a machine that takes away the blood from her rear, and a nurse comes to clean her wounds every other day. Well, 3 days after she was sent home I went to visit her and she was sitting in her chair watching tv. Her hand was bloody and she told me she had been scratching her foot. (she can't scratch her foot if her husband doesn't bend her leg to give her her foot.) She told me she sits and watches tv and when its time for her caretaker to come...her husband will come home from work and put her in bed before she gets there! I don't understand why he does this.

This has been going on for a few weeks and he seems to be in total denial that anything is wrong with his wife. She continues to sit on her wounds and watch tv all day and whenever she asks for her foot he gives it to her (she scratches it whenever his back is turned or when they are sleeping, and he knows this, yet he gives it to her anyway.) They have made no change to her diet now that she is diabetic and she continues to eat fast food. Her nurse came to me other day, very frustrated, and said that she needs to go to a nursing home because her skin is not healing at all, its breaking down, and she needs to be turned every 20 min...her MS is too advanced for at-home-care. The nurse said she asked the husband about nursing homes and he said absolutely not and has avoided talking to her ever since. I told her I understood, but it's none of my business....However, it has been eating me up inside. I feel like its not my business but I also feel like her husband is killing her...should I mention something to the nurse or step out? How do I understand what is going on? I'm pretty sure they are going to have to amputate her toes if this continues...last time I saw them they were gray and purple. This behavior seems crazy!

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Answers (4)

Merely Me, Health Guide

3/24/09 6:45pm

Oh my! This is a tough situation indeed. It must be so hard to watch all this and feel powerless as to what you can do.

I am sure you have already done this already but what happens when you tell the husband that you are genuinely concerned about your friend? Not as in telling him what he should do but...that you wish to be of help. People tend to not listen if they feel that they are being judged in any way.

I am not a doctor or a therapist so I don't know what is causing your friend to itch until her skin bleeds. This could be an MS symptom of feeling that type of itch.

Here is some information from the National MS Society:

"Pruritis (itching) may occur as a symptom of MS. It is one of the family of abnormal sensations - such as "pins and needles" and burning, stabbing, or tearing pains - which may be experienced by people with MS. These sensations are known as dysesthesias and they are neurologic in origin."

And here is how this is commonly treated:

anticonvulsants, such as carbamazepine, diphenylhydantoin and gabapentin.

antidepressants, such as amitriptyline and the MAO inhibitors.

But this is only a guess...it could just be a behavioral obsession.

She must be seen by a doctor at some point. I wonder what he or she has to say.

As her friend...you can provide information and support. But if you are not family I am not sure what all you can do.

I am going to give you the number for the National MS Society: 1-800-344-4867

I am wondering if they will have any suggestions of what you can do to advocate for your friend.

I wish you the best of luck with this. Let us know how things evolve.

Lisa Emrich, Health Guide

3/24/09 10:35pm

You certainly do care for your friend's welfare. There is so much I wasn't sure how to say so I asked a very good friend to read your question. He then responded to me with some thoughts.

His name is Patrick; his wife has advanced MS; and he has had many, many years of experience as a caregiver. In fact, he created a website for caregivers and those with MS who are facing caregiving questions - Caregivingly Yours. Patrick shares their story of transition and provides support for others in similar situations. I highly recommend that your friend's husband check it out.

How does your friend feel about 24/7 facility care? She must be involved in making choices and decisions in HER OWN CARE. With your compliments on overall care, it seems that recent care is of greatest concern right now. Here are some thoughts which Patrick shared:

* Home caregiving is juggling. A new symptom or progression can upset that balance until a new balance is achieved. Home caregiving is also holistic by nature, visiting provides a compromised view. In my 15 years as a home caregiver, I would tell anyone that "visiting nurses" have to be taken with a grain of salt.

* As for the referenced spouse caregiver ignoring doctors, in 19 years as a spouse caregiver I have learned that neurologists are useless. 25 years since her first probable diagnosis, Patti still has MS and no neurologist has EVER changed a Depend or picked her up off the floor.

* I resisted the transition to a care facility as I am sure most home caregivers and spouse caregivers do also. Unquestionably after doing something for a decade and a half it becomes about yourself as much as the person you care for. I just recently reflected on this in my blog entry care facility: 5th Anniversary.

* When considering institutional care, family economics are involved. While Medicaid can be of eventual help you must complete a decimating spend down of family assets, including property, savings, retirements, etc. It is overwhelming and can be confusing when first explored. ... Patrick suggests first consulting a lawyer familiar with local 'elder care' laws and regulations, as so much of Medicaid and care facility admittance and such are determined by individual State regulations.

* Yet the key to it all is the woman with MS. And yes not everyone will make what we or others believe is the best choice. If you feel strongly that there is 'abuse' involved, I would suggest getting a legal opinion about both abuse and fighting her friend's husband for medical advocacy.

Worrying will not help anyone, exploring options at least narrows choices. Friends are a critical part of the equation of living with MS.

Merely Me gave you good advice regarding the incessant itching which can often by caused by MS. It truly is annoying and can be painful. Medication might help relieve that symptom. The local MS chapter may offer programs to assist your friend and her husband in attending to her care.

Diane J Standiford

5/ 9/09 2:32am

Wow, this would eat me up inside too. The previous answers you got were great and Patrick is incredible, so here is all I can add: You felt the husband was doing a good job in the beginning, so it sounds like he is not out to kill her, but he is surely stressed out to the max, his beloved wife is suffering and he can not cure her MS. The son has also sacrificed much to help her, now it sounds like they have given up, run out of steam, and maybe feel she is happy when they give in to her desires even though medically this hurts her overall health. His reason for not wanting her in a nursing home was not made clear to you. It may be the finances, it may be a promise between them (friends don't tell us everything about their marriages) that he is attempting to keep. His mental state may be compromised as well. Caregiving takes a toll. I would reach out to my friend's husband as much as possible, get inside his head---where does he see his wife's life going? I would find a good nursing home and give him brochures, the staff there might even have some suggestions (they've seen it all). I would talk to a financial advisor and then tell the husband what I learned. I would tell him I want to help give him a break. And if all else fails, I would visit her as often as I could. You will be doing all a friend could do. One day, somewhere, she will smile and thank you for caring and now, if she could, she would tell you not to let this eat you up inside...she wouldn't want to do that to HER friend.

LinDiego

6/ 7/09 1:23am

The story of your friend and her home situation is very disturbing, and I hope I can read here later how this turns out. I do not believe that this woman is able to make decisions about herself, really. Do you? For her husband to turn her foot so she can scratch DOES seem abusive to me. I am suspicious of his motives. He said (I quote): "
* I resisted the transition to a care facility as I am sure most home caregivers and spouse caregivers do also. Unquestionably after doing something for a decade and a half it becomes about yourself as much as the person you care for. I just recently reflected on this in my blog entry care facility: 5th Anniversary."

I haven't read his blog entry. But this man seems stuck in a rut. If he were honest with himself, I believe he would say that he is putting himself first and not his wife. She is definitely on a downhill path to destruction. I would not waste any time getting her some serious help. Call the MS Society and see what they say. That is a great start. I would ask them or find out somewhere who can defend people who are helpless. Your friend may not be "totally" helpless in a legal sense, but it seems obvious to you and to me that SOMETHING needs to be done to save her!

Q: I know someone with advanced MS and her family isn't properly taking care of her. What do I do?

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