visiting father with ALS

[anna75458]

Hello all. My father was recently diagnosed with ALS a few weeks ago. Before that, he's had 2 strokes in the past 1.5 years. It seems like things have gotten worse over time. I used to hope that he would recover from the strokes but now, of course, I am trying to accept that he is going to die in a few years or months.

I live across the country so it's hard to visit, but I'm going to see him next month. I talk to him on the phone, which is difficult sometimes, but we can still communicate. Apparently he has trouble feeding himself, moving his limbs(he's "paralyzed" a relative said) and cannot type well. When I try to talk to his nurse, she tells me he is doing well. I want more details than that but it's kind of like pulling teeth.

Do ALS patients all have a prognosis or is it sometimes unknown? His nurse says that he's fine and doesn't give me a time frame. I think he's living in some kind of home.

Also, I wanted to know if there are any activities we can do together. Can I take him to the zoo or aquarium? Is it a simple matter of taking him around in a wheelchair or is this idea a lot more complicated than that? Should I bring his nurse too? He's in Atlanta if that sparks any ideas. I'd love to be able to do something fun with him because talking is so hard. I'm only going for 3 days. I wanted to go for more, maybe 5, but I'm afraid about losing work(they don't pay for a vacation), time at school and time away from my family.

It's hard to have my father go right now. At work, my customers will mention their parents(and the customers are 40-50 yrs old), and I ask myself mentally "Why do they get to keep theirs all this time?" I get really sad about it. My mother passed when I was young, so after my father goes, I won't have any extended family. I'm in my mid-20's, which isn't young, but young to lose a parent I think.

Anyway, sorry for that. Is there anything I should be doing for him? Bring him a gift? I think I'll do that. Any advice is appreciated, since I'm not familiar with ALS patients.

 

[jamiem]

I am very sorry about your Dad and sorry that you lost your mother at such an early age. My son is also in his mid 20's with a new baby. He makes sure I have pictures in frames to look at them throughout the day. I also have ALS and am in my mid 50's. Just go see your Dad if only for three days and give him big hugs. That will mean everything for him. Find someone to help you deal with your own grief! Sending hugs today.

 

[notme]

Perhaps you might want to think of bringing him to your side of the country to live. If he's in a nursing home, im guessing he has no family in GA.

What he will be able to do when u visit depends on how advanced he is. If he uses a bipap for breathing, an outing may be difficult.

As for communication, we have members here that communicate via a device that uses their eyes to type. The ALS assoc may be able to give you information on them. I don't know if medicare pays for them or not.

 

[momap53]

My daughters range in age from 25 to 30. I'm 59. The most precious gift they give to me is their time.

His actual physical abilities, equipment needs, and fatigue level will determine what he will be comfortable doing.
Surely the nursing staff can better communicate his abilities to you. Many facilities maintain a list of who they are allowed to provide information to. There is often some type of code word or number you must give in order for the staff to be sure that you are indeed who you say you are. Current HIPPA regulations make this a necessity in order to assure patient/ client privacy.

Is he using a power wheelchair? You would need a specially equipped vehicle in order to transport him in it. Is he able to make transfers on his own, or does he require complete assistance?

Good luck, I hope your visit goes well.

 

[brooksea]

If the nurse will not give you detailed info, perhaps he has given instructions to keep certain things from you so as not to upset you. In any case, I would check with him to see if he has registered with the ALS Assoc in ATL and the MDA.

Every pALS varies in their progression.

Good luck to you and your father. I hope you have any further questions, especially after your visit, that will return here to ask.

 

[tammyg]

Shame you can't take some t!me Off , fam!ly leave act and all just don't work all the t!me. !ts hard to make older people move. Maybe a l!ttle blanket for h!s legs would be n!ce, they even have those ones you can have a p!cture pr!nted on them, or h!s favor!te sports team. !f your are an only ch!ld you m!ght want h!m to move closer so you can make sure he !s gett!ng the lov!ng care he needs though. !ts hard when they cant talk too good and !ts go!ng to get worse. So sorry you have to go through th!s. Don't let dad see you down when you v!s!t, and the hardest part !s don't make a b!g deal when he starts cough!ng and has to clear th!ngs, when eat!ng also. ! th!nk the zoo sounds good or go see the f!sh w!th the A/C. Good Luck, maybe you should read up on h!s cond!t!on before you go though so you are not floored when you see h!m. Sorry

 

[anna75458]

Thank you for the support. I'm not actually sure if what kind of wheelchair he has.

I'm going to ask him if he uses a bipap. I'll also ask if he thinks he can go out or not, then confirm the answer with his caregiver.

About Dynavox or other communication devices: I am really curious about this. I read up on their website about it, but I'm confused about the funding/cost. From what I gather, I would need my father's physician to write up a request form, have a speech therapist consult with him and then submit the request to Dynavox. Is that how it works? I think a device would be incredibly useful - he can barely type and I don't know how he talks on the phone(if he holds it up or has a bluetooth or something).

He has some family where he is, but I don't think that they care enough about him to let him live with them. He might need constant care too.

 

[Miss]

He will need constant care, so if he is in a nursing facility, that is the best place for him if there is no family member willing to take him in. Don't think negatively of family members for making the decision not to do it. It is an enormous commitment. It is just not possible for some.

My husband loved to go to the zoo. If you can swing it, really try to do something like that. If he isn't on BiPap full time, it should be no problem as long as you have the transportation. My husband was in his late 40's when he was diagnosed, and our children were in there teens. It is very hard to deal with at such a young age. Like others have said, your time and attention are the best gifts you can give him.

 

[momap53]

Many of us are followed in an ALS Clinic where we are visited by each of the Specialists during Clinic. The Neurologist, Dietitian, Respiratory, PT, OT, Speech Therapist, Social Worker, ALSA or MDA representative. They then make recommendations for our upcoming needs, the script is written and the appropriate DME Provider contacted and arrangements are made for delivery and set up of the needed equipment. The equipment is usually covered by private insurance or Medicare, Medicaid. If not, you can purchase the item privately and submit a copy of the script and receipt when filing the tax return.


Accessible vans can be rented from a local mobility company for a few days or longer at a reasonable price. I'm sure there are some in Atlanta. If you can let them know the make and model of the power wheelchair they can guide you in choosing the appropriate vehicle. Make sure to have them review all safety precautions and have him wear the seatbelt that is provided on his chair.

Please give us an update after your visit. Some one is always around to ask advice of, use as a sounding board, lend a shoulder to cry or or offer a hand to hold.

 

[cervus]

Sorry about your dad's diagnosis. I think your upcoming trip will provide you with many of the answers to which you're asking questions - what type of wheel chair, BiPAP, where he's living, who is taking care of him, who to contact to ask about his care, etc. Someone will need to advocate for him and if no family is available, perhaps a close friend? It's a tough disease to go through with family/friend support and going through this alone would be much harder I think. Certain activities may be limited but there's also so much one can do with the right help and equipment, etc. Please seek guidance from his local ALS Society and ALS Clinic. They may be able to provide you and your dad with some much needed support, for emotionally and physically. There is so much equipment to help make your dad more comfortable during his progression. Take care. Yasmin.

 

[rosec]

Sorry to hear about your Dad.
You said it is hard for your Dad to type. Does he know about the 'on screen keyboard'? It is an accessibility tool that can be used with any application. If he can use a mouse, he can type with the on-screen keyboard. My husband uses it to write email, write documents (Microsoft Office), browse the web,... etc. Just google 'Windows on screen keyboard'. I am sure Apple has something similar if he uses a Mac. May be you can get him started on it when you visit him.

 

[anna75458]

Thanks again! I told him about the on screen keyboard(that looks useful!), about registering with MDA/ALS assoc. and if he was curious about Dynavox at all. He hasn't answered my e-mail about my bipap question, so I'll call him tomorrow to ask.

They actually do have wheelchair-accessible vans for rent in his area. Unfortunately, you must be 25 to rent it - same as with rentacar. I'm 24, so that really bites.

I wonder if he should have been diagnosed with ALS last year instead of just recently. He seems to have had all the symptoms before. He's in his early 60's, which isn't as young as many, but I wish he could have lived more. Oh well. I guess there's no reason to look back on any regrets now.

 

[tammyg]

Shame you can't move h1m where you l1ve 1n a place to take care of h1m or you move there. ! hate for you "To look back and have more regrets". Th1s 1s a horr1ble, and 1 mean horr1ble d1sease to go through w1thout constant love and support. They are very deressed and scared. th1nk about 1t....