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CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
209
Reason
Loved one DX
Diagnosis
02/2011
Country
US
State
CA
City
Roseville
I wish I knew how to anticipate his needs. I am getting nervous, scared, and anxious. He is trying so hard to be strong, but....well, I am sure you understand.

He is coughing more and moving a lot less. He fell twice this weekend. Both times I was walking with him for support, but the first time he completely caught me off guard and we fell together. The second time, I was able to support him.

My biggest concern now is how hunched over he gets, especially when he is tired. It is so sad. I am thinking it is time for a hospital bed so that he can more easily get in and out of bed, but also so he can sleep with a little incline. The last time we talked about it, he was against it. He doesn't want to because then we won't be able to sleep together. I told him that a smaller bed wouldn't be a problem for me. :p

I guess I don't know what I am asking. Maybe, just looking for a shoulder... or help in trying to anticipate what comes next?

ARGH. :mad: Sorry not very happy or uplifting this morning. Just hate this.
 

ReneeM

Active member
Joined
Aug 23, 2011
Messages
73
Diagnosis
08/2011
Country
US
State
Michigan
City
Westland
Dear Coach Meg
I know exactly how you feel.... My husband first resisted the walker, but found it helped anyway. He too is hunched over when he walks.

I contacted the local ALS org and or MDA. I got several things from their loan closet and just brought them into the house.. He soon saw the blessing in having them.

Also, the social worker from ALS told him to save his energy on other things... things he wants to do.. the electric wheel chair on loan has been a god send.

Also, we were able to get a lift lounge chair my parents had used.... Karl sleeps very soundly in that.. he is resistent to a hospital bed.

Talk to the social worker at your local clinic or als or mda org. They can help and analyze what he needs.

My prayers are with you...
 

Bella77

Active member
Joined
Jun 16, 2011
Messages
36
Reason
CALS
Diagnosis
06/2011
Country
US
State
Michigan
City
Fenton
Hi, I know exactly how you feel, my husband fell last week when he was outside in the barn, didn't tell me for about 4 days. Lately he's been having alot of phlem that he coughs up, and he gets up at nite and sits in the living room coughing. I told him we could get something for that and he said no.
We can barely understand him anymore, and he walks like he 100 years old. It's really sad to see a vibrant man loosing everything that makes you who you are.
We all need to stick together and support each other which I know this site is good for, thank heaven!

Bella
 

Mark's Girl

Member
Joined
Jul 8, 2011
Messages
16
Reason
Lost a loved one
Diagnosis
03/2011
Country
US
State
CA
City
Orange County
Dear CoachMeg,
Staying ahead of his needs is a daily challenge. My husband was diagnosed 3/11....His onset was 11/09.

He started using a cane to walk in 12/10 after a fall....and by April he was using a rolling walker (1 on each floor of the house). He started having extreme problems walking up the stairs in the house....In June we had a custom Stair Lift installed and it has been a true blessing.

Since June, we have:
1) Purchased a Manual W/C
2) Purchased a Hoyer Electric Patient Lift
3) Remodeled the downstairs bathroom to include a roll in shower for him
4) Purchased a Rehab/Shower Comode Chair
5) Purchased a Vitamix Blender

Last week, he asked me to order a Hospital Bed...After much research, we ordered a Hi-Lo bed which is fully adjustable in Twin-XL (He is tall)....this bed has all of the head & foot raising functions and most important to us was the adjustability of the height of the bed. It goes from 22" to 32"...which will make it easier for him to get in and out of the bed and ultimately easier on transfers when he is no longer able to assist.

He struggles with Phlem...and we are using the Musinex - Childrens Melts...big help to him as his swallowing is a big problem and he cannot easily swallow pills.

So far, he is still refusing the PEG....and has said he is not ready for the Cough Assist/Suction equipment....(He is losing weight dispite all of my efforts to spike his food with Benecalorie and as much heavy calorie items as I can get into each meal) (I on the other hand have found a good bit of what he has lost)

He does use the Bi-Pap at night...and it seems to make him feel better.

His next Clinic appt is in early November....and I expect to get the script for the Power w/c and the communication equipment, Hospice?

I hope this info is of some help to you as I have felt the panic of not having what he needs when he needs it so, I understand how you feel. The information I have received from this Forum has been priceless....

I wish you all the best as we travel down this road together!

D
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,781
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
Mark's Girl, I would stop the order on the twin bed and get the wider bed if it will fit well in your room. You will need the additional space to turn him as the disease progresses. My husband was 6'1, too. We had the twin XL to start with but had to get the wider bed after about 10 months. It would have been much easier to start with the larger bed.
 

Mark's Girl

Member
Joined
Jul 8, 2011
Messages
16
Reason
Lost a loved one
Diagnosis
03/2011
Country
US
State
CA
City
Orange County
Hi Missy,

Are you talking Full size?

D
 

Miss

Very helpful member
Joined
Apr 11, 2010
Messages
1,781
Reason
Lost a loved one
Diagnosis
04/2010
Country
US
State
In the Land of Cotton
City
Way Down South
it's more like the old 3/4 bed. Not quite as big as a full. It is actually the bariatric bed (for overweight people). But, it should be suggested to anyone that is over 6 ft.
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,563
Reason
Lost a loved one
Diagnosis
07/2009
Country
US
State
CA
City
San Jose
OK...haven't really been paying attention to who may or may not be dealing with FTD also so I'm just going to throw in a couple of personal experiences:

We had a full size adjustable bed, the idea being he would be more comfortable, could sleep with his head and torso elevated, and because it was height adjustable he could get in and out easier. It also came with optional extra large control buttons. Sounds good, yes? Until he would go to bed and I would hear "bzzzzzzzt" "bzzzzzzzzt" from his room (we had converted our living room into a bedroom for him). He would play with the buttons adjusting the bed and moving it up and down like a carnival ride. And as far as sleeping elevated? He would fidget around until he had himself sideways between the elevated head and foot ends of the bed.. he looked like the meat in a giant taco! And seemed to sleep fine that way. So... just remember that this is another area where you go in with the best intentions and do the best you can, but be ready to "go with the flow."
 

Mark's Girl

Member
Joined
Jul 8, 2011
Messages
16
Reason
Lost a loved one
Diagnosis
03/2011
Country
US
State
CA
City
Orange County
Oh Lordy! This should be interesting.....the challenges never end!

D
 

valg

Member
Joined
Feb 19, 2011
Messages
28
Reason
Loved one DX
Diagnosis
08/2009
Country
BGI
State
St George
City
Island
I have found it a great help to try and stay ahead of what we will need. Takes away some of the anxiety when you have things in place.
My hubbie was also very resisitant to accepting any new equipment untill he absolutely had to. Having it oin the house seemed to make it a bit more acceptable.

So far we have gone through -
grab bars in shower and in the bathroom
Shower comode
walkers - found that 5" wheels in the front worked better for him than the 3". Also we used the ski gliders.
Go-chair was his first wheelchair. He now has a bigger custom one
Recliner chair with lift up feature - this is the best purchase. It helped him with sitting and standing as he got weaker - he also slept in it a lot. Still spends the day in it.
Hospital bed
Air flow mattress (by Drive)
Chair cushion with a gel filled hole.
Hydraulic lift with split sling
Bipap and portable suction - he wont use them yet but they re here

His fingers would contract in on a night and be very painfull. I use two bandage rolls and put them in his fist. As his fingers opend up, I put a sports sock in the middle of each
Other usefull things are airline pillows and bean bags.

Hope this helps.
 
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Okie2

Distinguished member
Joined
Dec 21, 2010
Messages
259
Reason
PALS
Diagnosis
04/2010
Country
US
State
Oklahoma
City
Bartlesville
I think you can get the bed paid for if you have a prescription from the doctor? Might check with the clinic?
 

Beach Bum

Distinguished member
Joined
Oct 5, 2010
Messages
142
Diagnosis
08/2010
Country
US
State
SC
City
Conway
Have to tell you,pressure relif mattress for me was the best,air mattress,so,so,comfy on a hospital bed,only way to go.
 

cubcake

Distinguished member
Joined
Jul 18, 2011
Messages
271
Reason
Lost a loved one
Diagnosis
10/2011
Country
US
State
Ca
City
San Ramon
OK...haven't really been paying attention to who may or may not be dealing with FTD also so I'm just going to throw in a couple of personal experiences:

...and I would hear "bzzzzzzzt" "bzzzzzzzzt" from his room (we had converted our living room into a bedroom for him). He would play with the buttons adjusting the bed and moving it up and down like a carnival ride. And as far as sleeping elevated? He would fidget around until he had himself sideways between the elevated head and foot ends of the bed.. he looked like the meat in a giant taco! QUOTE]

Okay....I'm reading this stuff in my cube.....and I'm laughing! My cubie walks by and says "Are you laughing at the ALS site again? You are some kind of sick!" :lol:

Sometimes you just have to laugh.....am I right?
 

joni51

Senior member
Joined
Sep 8, 2010
Messages
992
Reason
Lost a loved one
Diagnosis
10/2010
Country
US
State
Al
City
Valley
hey sometimes we have to laugh to keep going..lol Bruce will use his cough assist and suction, but not the bipap yet..even though they want him too. He says it dries his mouth out, anybody have a solution for this?
 

Gentleman Jim

Distinguished member
Joined
Dec 28, 2010
Messages
208
Country
US
State
Indiana
City
Fort Wayne
You all sound so with it. Remember, if you cross a bridge before you get to it, you
pay the toll twice. take it for what it is worth.

Eddie is my PAL, he is locked in. I am the only one at his house, except for his son
that has heard his voice. All our caregivers have not. We have 24/7.
I taught all of them to think it was you laying there. What would you want.
None of them is male, so there are some male things that I tell them that
they are ok with.

Getting them to use the Bi-pap is easy. When a little child won't eat, when they
are hungry, they will. When they can't breath, they will.
When Cleveland Clinic practically tells you to go home and die, what are you
going to do to prevent that? Don't pretend that it is not happening.

Until one month ago he was able to use the urinal, a two week hospital stay
converted that to a cathiter. We now have a eye gaze. He can blink, but it
is hard to focus, but we are working on that.

For now, we go through the alphabet. He blinks or can move his arm slightly to
sound his alarm for the letter.

I have two ladies that have been with us for over a year. The new ones is really hard
to second guess, but we do a pretty good job. Obviously, I could go on and on,
but you all are doing a fine job.

Bless you all,
 
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