People with MS, or other chronic illnesses - HELP!

Miscellaneous and Personal Stuff I Must Share
1

I am turning to you, fellow dopers, with the hope that one of you can come up with the magic phrase to help me change this situation that is rapidly heading down the pipes.

My BIL has MS. He has had it for some time, and was diagnosed before they were married. They have three boys under the age of ten and up until now, things have been okay, with one exception.
I have to admit at this point that I do not have MS, nor any other chronic illness (to my knowledge). My husband and daughter are pretty healthy, with the exception of my daughter’s short problem with JRA in her knee.

My sister and bil have always frustrated me because he just seems content to wallow in it. He does not exercise or have any hobbies. When he left his job due to stress and inability to get up and down the stairs with ease I gave him literature on courses he could take to work form home (computer programming, web design etc). In my mind the healthier you can keep your body (exercise) and mind (being useful) the less the disease may effect you. He went on disability and she became the main breadwinner.

He has done nothing. For a long time all three of their children were in daycare because he didn’t feel he could handle it. In the past few years he has mostly stepped up to the plate and started helping out more around the house.

Then last week he had a seizure. It was the first time he suffered anything major (other than being off-balance and some emotional problems). This weekend he had another one.

My sister does not want him left alone for a minute. She has asked everyone in the family to help out by spending their spare time over there, taking time off work if possible etc.

Basically she sits and watches him as they both wait for another seizure to happen. She had a bar put in the shower and bought him a walker. He sits around all day and watches TV while his “babysitters’ do housework and stuff.

I called her to let her know that a local pool was having aquacize for MS, her response was “How will he get there?” Ummm, bus? I suggested if he is worried to be alone why doesn’t he volunteer days at the MS society, or with another not-for-profit?

How can I (gently) show her what a bad idea this is? Concern is fine, but she is acting like they should just wait for him to die.

2

I don’t know much about MS specifically, but my husband does have chronic health problems.

It can be really hard for an outsider to understand how life is for a disabled person, particularly if the disability isn’t as readily visible as, say, a missing leg.

My husband has good days and bad days. On good days he does get up and get out, but he tends to do it alone because he can’t physically move as fast as normal people and it can get frustrating on both sides. Other days, the bad days, he doesn’t go anywhere. This can lead to a perception he’s just lying around the house ALL the time.

Exhortations to “get over it”, “get up and get moving”, or suggestions that a regular exercise program would help are not actually helpful. He does what he can, it’s just that he can do less than other people not familar with his condition think he should.

Now, like I said, I don’t know much about MS, but it could be that it is affecting him in a way where it really does interfere with him doing much of anything. Or he could be a lazy jerk. I don’t really know.

I am, however, concerned for your sister - does SHE get any time away from her responsibilities (perceived or actual?). As the able-bodied in my marriage, I’m all too often expected to play the martyr. VERY important that she have some “fun time” of her own, some sort of hobby, whatever.

3

I’m afraid this isn’t going to be much help, but it’s all I have.

My wife has MS, and is determined not to let it bother her. She’s on a treatment program and generally does all the “right” things, but it’s some of the things she doesn’t do that people don’t understand. For instance, she doesn’t attend any support groups or anything like that, because it really bothers her to be around people who are badly debilitated by the disease.

MS takes differnt forms. My wife has remitting/relapsing MS, which is the kind to have if you have to have it. She probably only has three or four exacerbations a year, at least ones severe enough for us to notice. The progressive form is much more debilitating, and unfortunately that’s the type that hits men more than women.

MS progresses much faster in men than women, and it’s almost always actually worse than it looks. If you brother in law needs a walker to get around he may be flat out incapable of doing many other things.

4

My mother has primary progressive MS and has had it for quite a while.

Depression is often a side effect of the disease. My mother takes an antidepressant and stays busy, both of which help. But you can’t make someone do something they don’t want to do.

Has your BIL seen his neurologist about the seizures? It might be a good idea if both your sister and your BIL went; the neuro might have some suggestions and evaluate both the seizures and possibly initiate treatment for any depression that may exist. He (or she) can also make appropriate referrals for any other services that may be needed.

Robin

5

Poysyn, I’m not sure that you can change the situation. While I will agree that BIL’s attitude sucks, you can’t make him change his outlook (although you can try!) MS has a variety of nasty tricks that may also be playing a role in his misery - he might suffer mental confusion, depression, extreme fatigue, etc that really might be keeping him from being able to enjoy work or hobbies. It’s entirely possible that these things could be managed with medication, though. Important factoid - MOST people with MS live a normal or near-normal life expectancy. So unless he’s really, really ill, he’s not likely to just croak!

Also, some people are just lousy at being sick. Keep trying to get him interested in fun activities, but realize that he may not respond. A kind gesture to him might be to send him some enjoyable movies or whatever he does like to do right now.

6

Wallow is a very good word that you have chosen.
He is probably in a state of grief. A deep state of it. Imagine being an able bodied man and everything is hunky dory in life and then get the message that your body is failing you in microscopically small steps and will never get better. (And you don’t even get a Telethon for the disease either.)

I think your gifts to him of the classes and whatnot are wonderful and you are a good person to think along such positive ways. Most people back away went Bad Things Happen To Nice People. As in: You never hear from them again until it is Funeral time, if that. Unfortunately, he is probably so depressed and thinking only* the worst will happen any day now * that what is the point of trying anything anyways.*

I refer to this as The Eeyore Mentality. I watched it unfold and entrench itself with my entire family from the day the diagnosis of Muscular Dystrophy was made when I was 12 to them. This has firmly wrapped its slippery tentacles around the entire family and they don’t fight it or anything. It’s like boxing jello.

It is extraordinarily frustrating to have a front row seat too. I’ve been sitting in these seats for nearly 30 years.

You cannot fault your sister for being over protective. It is hard to watch that and it isn’t really helping him by coddling him either, but the flip side of it is she could ignore the problem and pretend it doesn’t exist and go on like La-De-Da everything is fine. ( My sister in law is nearly like the Latter with my last surviving brother. It’s a little unnerving to say the least.) She has a lot on her plate and is honoring that glossed over part in the wedding vows of ’ In Sickness and in Health’. You would be surprised on how many spouses dump their SO when things are much worse (catastrophic accident) than what your BIL is going through. It is horrifying.

Maybe with time and a gentle shove towards counseling ( group or solo) or contacting the local MS chapter for assistance ( ramps, wheel chair, emotional support) things will progress towards the happy medium of Not Being Coddled and Not Being In Denial.

What I have learned from personal experience ( YMMV) **is that you cannot make the person snap out of it or engage their interests. ** *They have to want to do that. * I would take my bedridden brother buttloads of movies and back issues of magazine subscriptions ( a wagonful every month) and he never read them or watched the movies. In five+ years of being in a group home he never read them and only had basic TV ( The.Horrors!). Eventually, what I did was offer everything to him first and when he passed on it, I gave his roomie first dibs. Then I went up and down the hallway to hand it out, where they were always welcome. If you ever want to be truly depressed and truly thankful, spend an afternoon in any group home out there.

What you probably can do to a much better result is take the kids out for some one on one outings. ( Or three on one, if your budget and brain can handle the chaos.) Movies. Zoo. Sleepovers. Whatever. Their lives are forever disrupted and they will soon forget what it was like to have a normal-able bodied father and a mom that wasn’t frazzled. Their memories will be replaced with the vision of a shell of man sitting in his chair or on the couch, watching TV and waiting for death to come knocking.

This will affect the rest of their life and how they handle crisis, life, relationships and daily stuff. The depression will imprint itself onto their very personalities and they won’t bloom into the person they could become. By giving a day or weekend into the Real World, away from the Gloom of their house, you can show them there is life outside it all and to not give up their dreams. I am speaking entirely from the very core of my being on this.

Another thing that you could do is offer help around the house that is too big/dangerous for the kids at this stage of the game. Cleaning gutters, mowing a lawn, trotting crap out to the curb. Giving her a little break over the entire care of the house.

I am sorry shitty things are happening to your BIL and your sister.

7

My humble apologies for the above coding errors.

8

It doesn’t seem to me to be unreasonable to take a little time to go to the doctor, get some tests done, and spend some time seeing if he continues to have seizures and, if so, how frequent and severe they will be. The onset of a seizure disorder must be a huge life adjustment. I could certainly understand if the guy didn’t want to be on the bus or in public for fear he might have a seizure. Is staying home all the time a successful coping strategy long-term? No. But in the short term it may be warranted as he and his wife get a handle on what, precisely, they’re dealing with now. Not everybody successfully snags every curveball life throws; sometimes it knocks you down and you have to figure out how to get back up, and that can take some time. So I’m not sure Monday-morning quarterbacking their decision on how to deal with new and traumatizing development is all that helpful.

9

Allow me to clarify - it’s mostly because of the chances of him falling back into depression that this concerns me. the oldest boy is already having problems and is quickly being followed by the middle child.

I am more than willing to help out, I just know from my own experience with depression that not having anything to do with your whole day isn’t going to help.

I just know that both of them are waiting, night after night, for him to have another one. The kids are scared and walking on eggshells.

I guess my point is that MS is a terrible, insidious disease I just wish they weren’t acting like he is going to drop dead any second and use their time together.

10

I forgot to say thanks so much for the responses and I know I can think, “If it were me…” but the fact is, I don’t know, because it isn’t me and I don’t know what I would do, because Thank God, I don’t have to deal with a crisis like this.

I know on a smaller scale with Darby’s JRA we have always encouraged her to do anything and everything, we watch for signs of pain or discomfort, but I want her to run and jump just like any kid.

11

Hi Jodi,
You are absolutely right that it isn’t fair to make any judgements so soon, but this is a trend that has gone on for years. He is prone to depression and will just zone out for days, or weeks, leaving his family in a lurch. My sister is completely stressed out trying to handle a mountain of debt, sick husband and three boys that are struggling to deal with this situation. I absolutely agree that in the short term they need to find out what is wrong but she isn’t talking short term. She is asking people to arrange permanent days to come and sit with my BIL.
Ultimately I am so worried about my sister and those boys, my bil already has lots of people worrying about him :slight_smile:

12

You’re absolutely right; it’s a terribly difficult situation. I sympathize with your concern for your sister and her family.

But I also think you’re wise to realize you haven’t walked a mile in her moccassins, so to speak. You might want your BIL to react differently, but he’s not your husband or father and, ultimately, is only your problem inasmuch as you choose to make sister’s problems your own. But you can’t make him act or react as you want him to. All you can do is be there for your sister to the extent you think is practical and reasonable, hopefully being careful not be become resentful because she (and he) are making decisions you think you would make differently.

Asking you to rearrange your life to babysit your BIL is not reasonable, long-term, IMO. But giving your sister a break every now and then (respite care) might be, and taking out your nephews for fun and a change of scenery might be as well. I’ve never been in this kind of situation either, but it’s pretty clear it must be both very, very difficult and without an easy solution. So I would only encourage you to be supportive of your sister, as opposed to critical, because she probably really needs you right now. I know it’s hard to remain supportive and not be critical when you perceive her, or her husband, to be heading down a wrong path, but just remind yourself that that’s not your call to make. Let her know you’re there for her, but give them both time and space to work things out. That’s all the advice I have, and since I’ve never faced such a tough situation, I’m probably out of line to even say that much. Best of luck to you and your family.

13

My Dad had Parkinson’s Disease and my mother was his carer.

They both got comfort from joining the local Parkinson’s society, where everyone else knew what they were gonig through.
Also the family rallied round to give my Mum regular breaks. It is incredibly stressful to care full-time, especially for a loved one.

Good luck.

14

Another option is to look into a day nurse for your BIL.

15

This bears repeating.

The disease itself causes clinical depression, which gets exacerbated by the other stuff it does to you. Things happen to you seemingly at random, like one day forgetting how to spell your name, being totally incontinent the next, and things like “I could walk yesterday, and I’ll be able to walk tomorrow, but I can’t walk today.”

I’ve met several people who have just given up. Some have even refused any treatment from a sense of wanting to get it over with.

I’m not an emotional guy, but MS makes me want to cry sometimes.