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Pandabear

Active member
Joined
Apr 30, 2012
Messages
36
Reason
Loved one DX
Country
US
State
Texas
City
Flower Mound
Mom was diagnosed at 73 yrs, Jan 2011, she lives in Wis with her 86 yr old husband who has huge balance problems. So yes that is a huge problem! I am her daughter and live in TX. Mom and Stepdad moved into an independent apt, now finally have home health care coming in almost daily. Stepdad falls all the time, and they so want to be independent and he is stuborn as heck to ask for help. He still drives and he took her to doc and she fell getting into car. Never asked for help and some how got her up..I guess the hardest part if not being there for her and having to trust the rest of my family to make sure everything is being handled. Mom is to the point where she needs help with dressing, showers, but she can still eat. She was the most healthy person I know, I swear she was going to be like Betty White and live to be in her 100s..but now this. so hard to take, depressing.. she is my hero, and I know she feels guilty, she was suppose to take care of her husband in his old age..I can barely understand her on the phone and we use to talk for hours with me living so far and no more trips for her to TX to see me and grandaughter..
She got so sick from Rilotek, and then the feeding tube made her so sick she ended up in hosptial then rebab for weeks just got back to apt. She uses a walker and wheelchair. Which stepdad pushes her..so for now I need all your help, tips, and what I can do from afar..I feel so helpless..this is going to be a long haul and I dont know where to turn..If I lived there I would want to take control and would be at the ALS clinic all the time..but I cant..I need help with the little things..like what can I get her for Mothers Day? I want to very much to make her life easier for the time she has left...:idea:
thank you!
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
Messages
2,681
Reason
Lost a loved one
Diagnosis
01/2007
Country
US
State
FL
City
orlando
Do they have help caregiving? if not, can you find and pay for a home health aide a couple days a week? That would be an awesome gift!

other than that-the gift of your time. go see her, sit with her, kiss her, talk with her, look at pictures together. make her and dad a bunch of meals that can be frozen. Make sure her living will is in order and you and dad know her wishes.
 

Ms. Pie

Very helpful member
Joined
Mar 26, 2011
Messages
1,847
Reason
PALS
Diagnosis
10/2010
Country
US
State
CO
City
Colorado
Do you have other family that lives close to them? If so and if you can't go there for an extended time then your involvement has to be limited. Have they contacted ALS Association near them? They are a wealth of resources, equipment that they can loan and information. Everything ALS.

http://www.alsawi.org/
 

rachelg

Distinguished member
Joined
Apr 14, 2009
Messages
226
Diagnosis
05/2009
Country
UK
State
Somerset
City
Yeovil
Hello and Welcome here.

Like Barbie says - photos and time. On fathers day and birthdays, the kids always rummage the photos to find one of their dad with them and then talk about the day the photo was taken. Also when the kids can't get round for a while, they send text messages with smiley photos attached - the simple things are really the best. My PALS loves listening to stories of times past.
 

Toto's Dorothy

Very helpful member
Joined
Jan 31, 2012
Messages
1,033
Diagnosis
11/2008
Country
US
State
Kansas
City
Emerald
I really like Barbie's suggestion on paying for a caregiver. Or how about a maid service that could include meals? Meals on wheels?

What really concerns me is the transportation fiasco. It has been mentioned here before and I don't know the statistics, but many deaths are from falls. And with your father not stable, would worry me. The office of aging can provide transportation and its free to those on medicaid and medicare. I'm self pay and use it all the time. They have vans to buses. The buses have lifts, so as your mother or father progresses and need wheelchairs, they can accommodate them. And usually with prior notice, you may have 2 caregivers with you.

You didn't mention moving them to you. Is that not feasible? Is there other family nearby? If so, would they be willing to help
with a little financial nudge? JW

And welcome to our wonderful, caring and knowledgeable family.
 

Pandabear

Active member
Joined
Apr 30, 2012
Messages
36
Reason
Loved one DX
Country
US
State
Texas
City
Flower Mound
Well they finally have home health coming in just about everyday, and stepdad is not my father so hard to tell him what to do, he is stubborn!...I hae one 1 brother and Mom has 2 sisters and rest of family is there, if it were up to me, I would bring her down in an instant..but not even a chance..I hate they they dont ask for help, I dont think he should br driving at all let alone taking her to doctors without another person.
Bad enough for Mom has ALS, but also dealing with elderly Stepdad doesn't want to give up his driving..and his independence..
I lvie in TX with my hubby and 7 yr old and the entire family is up there in Wis..it is not so much the actual care, it is the little things ..I think you are so right..she did ask for pictures..I will have to get them all printed up and send her a bunch!..

Any ideas on clothes that are easy on and off?...I read silky slipery pjs..is that good or bad? I fear she may slip out of bed!
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Pandabear,
The falls are a grave concern. Someone needs to intervene. Injuries to PALS from falls is so dangerous and can lead to an early death. Anything that would lead to immobilization for your Mom could really impact her independence as recovery may be slow and she might never regain strength in an injured body part. There's also a huge risk for your step dad. Sounds like he could use a walker. Perhaps some of the family could discuss the driving issue with his doc. He should not be allowed to transport your mother solo.
 

10starr

Active member
Joined
Apr 24, 2011
Messages
38
Country
US
State
GA
City
South
I would strongly suggest moving them close to you. As things worsen, you will end up taking trips out there anyway, and wouldn't you want to be closeby? It's a train wreck waiting to happen, and you as the daughter will probably be the one handling all the affairs anyway. That's just my two cents.
It is not easy at all, but I did it for my parents, and don't regret it one bit.

10starr
 

Pandabear

Active member
Joined
Apr 30, 2012
Messages
36
Reason
Loved one DX
Country
US
State
Texas
City
Flower Mound
thank you all for your input. I know Mom would never move to TX, I know she would love to be with me..her only daughter..but her husband and his family is there..and her sisters are there, one was a nurse so they thnk she has all the answers..well I doubt that I lot since she retired and is 70..she never even uses a computer to get information..
I do think we need to intervene on the driving..and transporting of mom, so far she can pretty much get her self up from chair but hard time out of bed, they use some belt thing she said and it helps..but if they both go down...scares me to death..

thank you all ...
 

momap53

Very helpful member
Joined
Jul 2, 2011
Messages
1,663
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
They're using a gait belt. You might ask about a transfer board in addition to the gait belt if the arms on the wheelchair can be removed.
Did she get registered on the CDC ALS registry? How about with the MDA and ALSA?
 

cervus

Senior member
Joined
Mar 18, 2011
Messages
935
Reason
Lost a loved one
Diagnosis
11/2010
Country
CA
State
AB
City
Leduc County
I'm so sorry for your mum's ALS diagnosis. Could you go down there for a while so you can assess their situation first hand and sort things out? Sounds like they need help and guidance. And like others have said, they should be in touch with the ALS Society/Clinics, etc. We so appreciated the help of our two daughters when my husband was ill. And that's with both of us doing all the advocating. Hope things work out. Yasmin.
 

Pandabear

Active member
Joined
Apr 30, 2012
Messages
36
Reason
Loved one DX
Country
US
State
Texas
City
Flower Mound
bad to worse...frustrated as heck...trying to get my aunt to go intervene..we all wanted to get mom Ipad for Mothers Day, he says no way not now..we are like when? she she can sit and stare and the wall feeling guilty for wrecking his life?..he pushes us all away but and only wants his son to help with insurance and money aspect..ugh..

I hate being far away..costs a fortune to fly up there, was just there for Easter..and that cost the 3 of us so much for flights and rental car..I keep praying that it is going to work out in the long run, like there is a long run, NOT!..I will give a little, tiny more time..I guess step dad is trying to get her in assisted living, but not sure that is answer either..she needs almost all day home care. Does ALS pay for anything? she has medicare and private insurance let alone some Long Term Care policy..but sure seams like no one pays for anything..I mean her 86 hubby is not what I would call a caregiver..so what happens to people who don't have a live in caregiver in the family?
 

brooksea

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Joined
Sep 27, 2006
Messages
5,226
Reason
Other
Country
HM
They need to seriously consider hospice, whether it be in home or in facility. Medicare will pay 100%. Why waste money on assisted living when hospice is paid for through Medicare? The only thing is, they need to make sure she has ALL the major equipment she may need, such as PWC, speech device, BiPap, etc.. before going on hospice. If she wants none of it, then it would be an easy decision.

Her doctor needs only to write the order and he should have no problem doing that with an ALS patient.
 

Pandabear

Active member
Joined
Apr 30, 2012
Messages
36
Reason
Loved one DX
Country
US
State
Texas
City
Flower Mound
thank you for your input. finally got my family to make plans to get to the ALS clinic in Milwaukee, after months of my telling them all about how they know the resources, they finally heard me!.. Also I will check into the hospice situation as well..appreciate all your support!
 

tammyg

Distinguished member
Joined
Jun 10, 2011
Messages
381
Country
US
State
md
City
baltimore
Anyway you can take the 6 month family Leave Act. How would your family feel about it. The hubby ect... with the kids and school.This is a hard one. Can they come live there, you know old people don't want to leave their home and all...I feel so bad for you.
 
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