Help for depressed ALS patient

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TomsSIL

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Hi, my name is Amy. My brother-in-law, Tom, was diagnosed with ALS in April. Since then, he has had a week long hospitalization, a feeding tube, a mountain of bills, fighting with the welfare people, and now, depression. He won't leave the house. We have asked him to do things with us and he always says, "Maybe another time." There never is another time. We don't live close to any support groups, so we are kind of on our own with this. We don't want him to just rot away in his house. Suggestions are welcome!
 

Katie C

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Is he on any medication for his depression?
 

notme

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Antidepressants may help, as already suggested.

Does he have live-in caregivers? Family close by? If so, keep asking. Things like going to a park or movie. One of the things that some with ALS go through is feeling useless.

make him realize he's still useful and his company is still desired. Plan an outing and try not taking NO for an answer.

You can also contact the local ALSA and see if their counselors can offer any other tips.

My thoughts are with you.
 

seaside

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Hi Amy,
Welcome to the forum. Like your brother-in-law Tom I was also diagnosed in April. Hearing that news left me stunned. But it was not mind numbing; at times my thoughts raced through the stages of grief over and over again. I didn't want to leave the house because now I was different and I didn't want to draw attention. That was then (and I'm not really different). You could try taking Tom to the movies - I found it to be a good start because I could hide in the dark. Afternoons are good because of the smaller crowd and mindless comedies are good just because they are. He may still say no, but keep trying. If you read enough of this forum you might find that it's not grand gestures it's simple pleasures.
Joe
 

brooksea

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Oh - I looked at your other post. You need to get something straight - SSDI (Social Security Disability Insurance) and Medicare ARE NOT welfare. Welfare and Medicaid are what you receive if you have very low income in proportion to the "poverty level." If your BIL has ALS, he automatically qualifies to be OK'd for SSDI and Medicare within 30 days of review from the time he applied. Then, the Medicare will take effect 5 months later and the SSDI 6 months later. This is from the effective date of his last day of work. If he has no other source of household income, then he may qualify for SSI (for low income).

Does he have any disability insurance from work?

And as for wanting to get out - it's only been 3 months since his diagnosis! Give him a chance to come to terms with this.
 

Atsugi

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Yep, when you add up the numbers, you discover that you have contributed thousands of dollars over your working years to support the Social Security of others. In exchange, you get SSDI and Medicare Plan A at no cost. You paid for it just like you would pay premiums on an insurance policy, so now you are entitled to it. Social Security is by no means charity.

Everybody adjusts differently. Each night, I take my wife and kids out to dinner and we take turns feeding her and holding her straw so she can drink. It takes several minutes to get the power chair and the dinner table adjusted correctly at the restaurant. Some people would be mortified by this, but my PALS is not.
 

pbush

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Going to afternoon movies was a godsend for my husband. It allowed him to be out in the world and also to lose himself in a film--escaping from the constant, unrelenting reminder of his changed life. In the beginning, he could walk into the theaters slowly, holding my hand. Later we used a transfer chair, which was good drill for the evolving need to get from the car to doctor offices, etc.

Now he feels comfortable being anywhere in his transfer chair. The point is that being part of the outside world (for as long as possible) helps to keep a PALS centered and engaged. Yesterday we took a drive, picked up sandwiches, parked under the trees at a local park, and listened to a few chapters of an audio book. It was good for both of us.

Situational depression is understandable. But don't give up on your BIL. Take little steps with fewer people involved in the outings. And always consider novel ways to achieve simple goals. Anticipate objections and give a step by step descriptive rehearsal of your planned outing so that it seems uncomplicated. Good luck.

V (a caregiver)
 

Atsugi

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Ditto pbush.

Get out every day, see every movie, eat at every restaurant, kiss all the girls.
 

TomsSIL

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Antidepressants may help, as already suggested.

Does he have live-in caregivers? Family close by? If so, keep asking. Things like going to a park or movie. One of the things that some with ALS go through is feeling useless.

make him realize he's still useful and his company is still desired. Plan an outing and try not taking NO for an answer.

You can also contact the local ALSA and see if their counselors can offer any other tips.

My thoughts are with you.
Thank you for your response. We have a rather unique family situation. Tom lives up the road from us (we live in a very rural area) with his step-father, in the house my husband and I own. Last September, my MIL passed away very suddenly, and Ken (her husband) stayed on in the house. Tom started to really have serious symptoms over the winter and moved into the house with Ken because Tom's own house needed so many repairs. Anyway, Tom was working nights at a large truck repair shop, and he slept during the day, so he didn't really have to interact much with Ken. When he became so ill that he had to be hospitalized, Ken seemed like he was going to really help out with the feedings and Tom's care. That has not been the case.

When Tom got food stamps, I took him grocery shopping and he got lots of things that sounded really good to him, because he is still able to eat and he enjoys eating tasty food. Well, Ken ate a good deal of the food that Tom bought, without asking and without sharing any of it. Tom got so angry, but didn't say anything, and lost a good deal of weight. By the time we realized what was going on, Tom was down at least 10 pounds that he could not afford to lose. We remedied that situation by going grocery shopping again, and keeping all of the food at our house. We all take turns taking his meals to him, one at a time.

This seems to have angered Ken, so we are now in some sort of weird stand-off. He will wash only the dishes he dirties - not any of Tom's. He won't help with the feedings, not even to get a clean tube out or to bring him a can of Jevity. We want to get rid of Ken, but because of an inheritance tax issue, he can still take one-third of our land as his own, even though he has done nothing to earn it. We feel like we have a sword of Damocles over our heads.

We do take care of Tom on a daily basis. Taking him to movies is not really in any of our budgets, nor is it practical. He never liked going to movies before, so it's not something that he would want to do now. He does enjoy going out into the woods with my husband or with my kids. He has a Gator Cart sort of thing that my older kids can drive to take him out into nature. They also watch TV with him in the evenings, and they have Sunday night movie night with him. I know, he's watching movies on TV, but it's different to watch a one dollar DVD from the library vs. spending $10 to sit in a theater.

I know this is long and rambling, and possibly confusing. It's just so new to all of us that it's hard to keep all the balls in the air all the time. Tom has always been a very mild-mannered guy. I joke that you could him him repeatedly with a hammer and he would say, "That's okay." We don't know that things are really driving him crazy until it's really bad. It's hard for someone with his temperament to change after 38 years, even though he needs to speak up now more than ever.
 

notme

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I'm so sorry he's having a tough time. It's good he has you to be sure he at least gets to eat! Is it at all possible to find someone to room there that can see to his daily needs while you can't be there?

There are always people looking for a place to stay--that can be trained to be caregivers as he progresses.

Depression sucks--depression when you're ill with something like ALS is perfectly understandable. The stages of grief are normal responses.

If he enjoys his TV--make sure he has one that he can watch whenever he likes. If he likes being on the internet, look at some of the inexpensive computers out there--there are programs made for PALS he can get free online. There are also supplies he can get from the ALSA or MDA if he's fighting SSI/SSDI

When one thinks of hand-outs, think of this. Each and every person in the US that has ever worked, paid a sales tax, paid an income tax--has paid for the assistance of food stamps, medicaid, etc. They are NOT handouts.

ALS, once diagnosed, is an auto-approval for SSDI and Medicare. Those are not income based programs at all. The normal 2 year waiting period for Medicare is waived in ALS. There is some good info on Medicare and SSDI on the ALSA website. He needs to apply if he hasn't. With ALS--he SHOULD also qualify for medicaid--assuming he has no or limited income now.

We have all paid our taxes into the system--for just this reason--when people need it, it's there. SSI is about $550 per month--but SSDI is based on how many work credits he has.

Encourage him to see if anti-depressants will help with the depression. I don't remember what level his disability is at currently--but the roomie sounds like a piece of work. I can think of some not kind names for someone that could treat another human being that way!
 

notme

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Darn it--not ONE link. Why am I being moderated this time? Sigh
 

TomsSIL

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Thank you, notme, for your advice. What we need to do is to have a good talking to with Ken. He is acting like Tom is the interloper in *his* home, which couldn't be more untrue. We had another issues with Ken today, though. My older boys went to watch "X-Men" with Tom, and they closed Ken's bedroom door because the police scanner was too loud and kept interrupting the movie. The scanner drives Tom crazy to begin with. So, Ken made a fuss about the door being closed. Tom was so upset that he left the house, of his own accord which is pretty amazing, got into his Gator and drove down the road. He finally caught up with my husband (his brother) and told him what is going on.

We all have so much stress going on that to deal with a 70 year old man's nonsense is, well, nonsense!
 

KissJ

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My husband and I are both on 20 mg of Lexapro. We couldn't go through this without the help of anti-depressants. It helps us to not count the days, but make the days count!
 

Atsugi

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Maybe move to Beverly...Hills, that is.
 

brooksea

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We don't know the history of Tom and his step-father, but if he can't have compassion for his own step-son, there is something wrong!

I don't mean to scare you and I don't know how fit or frail Ken is, but his actions are abusive! I would highly suggest you consult with your state's adult protective agency! Taking food, that does not belong to you, from a terminally ill person is abuse! Plain and simple. It sounds like Ken sees a meal ticket, instead of a step-son!

It sounds like this Ken thinks he has y'all to his advantage.
 
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