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Bill0808

Member
Joined
Sep 6, 2010
Messages
10
Reason
Loved one DX
Diagnosis
08/2010
Country
US
State
TX
City
Texas
Hello every one, this is my first post but I’m sure it won’t be the last. I just returned from my mother-in-law’s funeral. She was a beautiful and caring women who died after a long bout with Lupus.
About two weeks ago, in the midst of this, my Father-in-law was diagnosed with ALS. He has neglected his condition for some time, choosing to focus on he wife’s condition, and only went to the doctor after his daughter insisted.
My visit was the first I have seen him in about a year. His speech is slurred to the point where some things he says are hard to understand, of course the more time you spend with him the easier it becomes. He has moments of sobbing and extended periods of laughter. He has begun to drag one leg, although not so badly that it has effect his mobility. He still gets up early most morning and goes for short walks on a treadmill.
I recently retired from the military and my relationship with my in-laws has always been one of distance. With that said, my Father-in-law has always been there for us. Fortunately we never had to ask for much but just knowing that there was a safety net beneath me always has been of great comfort and now I feel it is time to return that comfort.
I must admit I am little lost right now. My wife doesn’t work and is with her father as they start the road too long term care, trying to get a grasp on where he is in the disease and what we can do to help. I know this won’t be easy and fully expect that he will eventually move in with us until the illness runs its course.
Does any one have advice on where to start, pitfalls to look out for or perhaps thing that they wish they had done early on?
My wife has already started taking the on the roll of primary care giver. My plane is to start researching organizations and programs that my be of help. I know that not every one is fortunate enough to have a third person to help but if you did, what sort of things would you like them to do? For those of you that have a support system, how have they helped you and maybe more importantly what sort of things have been unhelpful.
In the military we always say adapt and overcome, as I read through the forum I can see this is a trait that all of you share. I see my roll right now as supplying comfort to my Father-in-law support to my wife and trying to be a reasonable guide through uncertain times.
Any response is appreciated and thank you.
 
Bill0808,

It sounds like your father-in-law is quite a guy! He obviously considered his wife's lupus over his ALS. It's good of you to be forward looking at all of this.

We're here to help in any way we can.
 
Hi Bill,

I'm so sorry your in-laws have had such a rough and long time of difficulty, but your willingness to have your father in law live with you, taking your wife's time (sharing her) is wonderful.

I'd say, first of all, contact the ALS association, which is found on-line. Call them, if possible and ask for the number of your local branch. Then call your local folks. My own are 2 1/2 hours away, yet bring me equipment on loan indefinitely. Their assistance is wonderful both with planning ahead and support, including all kinds of equipment, assuming it's in their loan closet.

Have his doctor write down his diagnosis for ALS to send to the MDA, and also contact them. Unlike the ALSA, the MDA required me to send them the diagnosis. You will receive help from the MDA which is different, although there's some overlap with the ALSA. You want both. Both organizations will send you manuals about ALS to read.

I would advise you and your wife to talk to her dad about this disease to the degree he's interested. He may want to talk about dying and what he wants at that far point. If so, let him without being shocked. Getting an advance directive figured out is sensible, no matter what his wishes are. You just want to know WHAT they are so you're all on the same page. If he'd rather not talk about this yet, it's not unusual, so just give him space.

Accept and be open to any help which your friends offer, beginning now. They can shop, cook, clean or do anything which would help your wife. Bill, the fact is, help is necessary, even if you like a quiet house and like being alone. Don't shut yourselves off from friends.

This forum is wonderful. The folks with speech and eating problems often refer to themselves as "bulbarians", and have great advice. I'll let them introduce themselves to you, but you may want your FILs onset (bulbar, I assume) in your signature line so that it's seen easily.

Blessings,
Ann
 
Ann,

Thank you for the advice, unfortunately we have gone through a bit of a dress rehearsal for this but on a positive note we have learned a lot about end of life care. My reading tells me that my Father-in-law’s disease will be more difficult and where my wife made extended trips to see here mom and in the end was her primary care giver, I’m sure it can not compare to what she is about to under take.
The city where I live has an ALS Center and my town has a support group. I plan on calling them both of them tomorrow to get some initial information. I had not thought of the MDA even though I knew they had a connection with ALS. You would think this being Labor Day it would have dawned on me.
We have talked briefly to my Father-in-law but of course his focus has been more on Mom. I was happy to here him say as I was leaving that he knows the its time to turn the attention to himself.
As for your other ideas, I have a note book by my side and I’m dutifully writing things down. Thanks to Zaphoon and you for the quick response. I’m sure others will follow but it sure feels good to know people are listening.

Bill
 
Bill,

I agree with everything Ann mentioned above, all of it is GREAT advice. In addition, take a look around the house to see just how handicap accessible it really is. Is a ramp needed to get in and out of the house? Are the doorways wide enough? Is a possible bathroom necessary? Our family had/has all these problems. Our house sits on the hillside with a beautiful view, but our deck had to be modified with a ramp to get in and out. I work in a steel fabrication plant and had a couple of 2" ramps welded up also for the threshold of the front and back doors. Regarding the inside, those doorways were a bit of a pain also. I went online and shopped around for some offset hinges. (We use a transport chair vs. a wheelchair inside the house when moving through the hallway. The wheelbase isn't as wide and with the offset hinges was able to fit through the doorways much easier). Financially, we haven't been able to afford a bathroom remodel yet, so I don't have much input. Several folks on here have made the upgrade and I'm sure will be able to offer ideas.

I think the one big piece of advice I could give is for your wife, being the primary caregiver. I don't know the mindset of your father-in-law, but my Mom wanted to always push the envelope regarding her ability to walk. As he progresses, I would urge her to stay one step ahead of his walking/stability needs. We had take the next step about every two months...from a regular cane, to a 4-prong cane, rollater (highly recommended vs. a standard walker), transport chair, to power wheel chair. Any fall is bad, but with this disease they can be scary.

You mentioned he is dragging his foot? Look around online for braces for "foot drop". Not only will it help his foot, but also probably some back pain he may be have from having to overcompensate lifting that foot a little higher.

Bill, this forum will be a great resource for you. The folks here have been a tremendous help and have saved me an untold amount of stress.
 
My husband is the PALS in our house.

You are right when you say that the undertaking for your FIL will be much greater than it was for you MIL. What a kind and loving daughter your wife must be. And you certainly aren't a slouch of a SIL! They are lucky to have you two.
 
I spent much of Labor day going through the forums and picked up some really good information. I thought that I would start to post things that Steph, my wife, and I are doing in hopes of it becoming worth while for others down the road. Since I am new to the forum please let me know if there is a better way of doing this, also feel free to bring up different ideas. Not much to report today but I did want to get this in at the top so any one searching the forum could determine the gist of this one fairly quickly.
As I said reviewing the treads here has been not only helpful but inspirational. The courage and love that is contained with in is overwhelming and the stories have given me a much better idea of what to expect. My wife spent the day with her father going back to the neurologist. She to has been reading and wants to get a second opinion. She is also putting together a more complete medical history of her dad as some of his past illnesses and injuries could also cause similar symptoms. We both know this is somewhat of a long shot but feel it is still very worth while and at the very least might better establish where he is in his progression with ALS. She also contacted a local support group in his area and plans to stay on long enough to go to a meeting with him. Finally I believe they made him an appointment with the closes ALS center.
I did some of the same tings here, first contacting the ALS clinic and getting the name for the case worker in our area. The case worker was out to day but the staff was kind enough to send me information through the mail. I also asked about the new VA benefits, I have been emailed the information and will go through it soon. Finally I was able to pass some information along to my wife for her appointment such as getting a written diagnoses and tracking down military records that may be in the house. I really want to work the VA end of thing because I think it could be a real benefit and after 25 years of working with the government I know how long it can take to get things through the system.
I don’t plan on doing this a lot and I will try to keep things short. I think it just helps me to keep things strait in my head. As I said up top, if this is not the place for this sort of thing just let me know and I will direct my energy else where.

Thanks again for hour thoughts and information.
 
The VA is going to be such a big help. You need to contact a PVA rep yesterday. Call 1-800-827-1000, (VA national #)and they can get the application started.
 
You need to get in to the VA with you FIL's DD214, birth certificate and the completed forms ASAP. I would suggest you work through one of the service organizations (PVA, American Legion, etc.) Benefits begin and are paid from the date you file. Get the disability claim filed immediately. I would suggest getting a 4 inch binder with pockets. There will be follow up. There are so many benefits available, including nursing care.
 
My wife will be coming home tomorrow; she has accomplished a lot and hopefully has gotten us off on the right foot. She and her father have spent a lot of time with his lawyer. I know others her have said that this could wait but at least in our case we felt it was important get started. With the death of my Mother-in-law there was a lot to take care of, even without the ALS diagnosis, and with my Father in law still being very active it seemed like something we could take of now.
They have made an appointment with Duke University, which is the closest ALS center. This consisted of a number of other medical appointments with pervious doctors to sum up his condition and obtain medical records for Duke.
They also attended an ALS support group in the area. This turned out to be very helpful, talking to people who have ALS and their care givers really opened my Father-in-law’s eyes. Obviously coming to grips with all that has happened would be hard on any one but he seems now to have a better understanding of what he is facing and a better sense of urgency in dealing with it.
Finally the PVA has been contacted and all the paper work has been done and submitted. When I first started looking into VA benefits I thought it would be a long shot. The PVA has been very helpful and at least in my experience, it’s the one place that can clearly tell you about VA Benefits and the application process. Bottom line, 90 days of continues federal active duty is all it takes to qualify for full heath and death benefits. Disability benefits start at 30 percent based on the beneficiary condition but can go as high as 100 percent. People deemed to have a lower percentage can continue to reapply over time hopefully matching their percentage to their condition. I am also told that there is legislation being considered to make the percentage an automatic 100 percent. If anyone is interested in looking up VA benefits just remember that’s what they are, if you search for ALS VA you will get very little information.
On the home front I have made contact with many of the same organizations locally, in hope of making the transition to our area smother. The plan is to have him move to an apartment close by until he can no longer live on his own. I am concerned about his progression. Physically he is doing well but his speech is deteriorating at a somewhat alarming rate. My wife says she can barely understand him over the phone. I wouldn’t think much of this but she has been living with him for some time now and has become used to his slurring and translating it.
Once she comes back we will continue to work on the move and our own lives, getting ready for the day he eventually moves in with us. I guess our mantra has become “Stay ahead of the disease”. I hope we can. Once again feel free to point out if I am getting off track and to anyone else starting out I hope this helps.
 
I only have one small suggestion which has helped me and that is keep a diary. I record the visits by palliative care, the shift times for agency carers, cancellations, the date when equipment was sent for modification, date that equipment was returned, visits by allied health, comtech, the date we got our back up bipap machine, the visits by the remedial massage therapist...,anything health related. Agencies have tried to bill us for shifts that never occurred, the shower chair took two months to fix, and having the statistics on hand has been a good back up,

Thanks

Chris
 
I keep a journal, too. It is small enough to fit in my purse, so I always have it with me.
 
I had one large multi-section notebook with pockets where I could keep forms, etc... divided by neuro/kaiser, company benefits, social security info, etc. Then I had a smaller book that would fit in my purse.. besides taking notes, I was able to keep that rather vast collection of business cards from doctors, social workers, therapists, etc as well as an up to date meds list and a copy of the signed power of attorney & health care directive. In fact, our first appointment with Dr North, he took my notebook and literally drew a picture to help illustrate exactly what ALS was, along with how the diagnosis was made, etc.
 
Thank you for this post. My husband has just been diagnosised with bulbar onset ALS and I have the same questions "what now." Everyone has given some very good suggestions which I will take note of. Hope things are going well for your family.
 
Me too. this is all quite overwhelming and I feel there is so much to take care of. We will figure it out, but it is good to have the resource of folks that have walked this road,,, thank you..
 
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