Just trying to stay ahead of the runaway ALS Train!

Status
Not open for further replies.

Pollyanna

Active member
Joined
Sep 29, 2006
Messages
38
Country
US
State
TX
City
Azle
Help! I'm my husband's caregiver and have nobody coming in to help at this time. So far we've been able to stand him up long enough to transfer to the toilet and back to his recliner/lift chair. But this week his legs and arms are so weak, he can no longer stand, so I'm using a Hoyer lift. Getting better at it, but we both hate it. He's about 220 pounds now, and I'm 5 feet tall and weigh 125 pounds. I mention that just so you can picture what we go through each time we have to do a transfer.

Now I have several new problems and am coming to y'all for suggestions because I know you are walking in our shoes!

1. How do I find a person to come in and help us? Is there any financial assistance for this type of care? And how in the world do you schedule such things as toileting? For us, it never happens at the same time of day!

2. How do I change his clothes? It's all I can do just to get his pants down far enough for toileting, and almost more than I can do to get them pulled back up again. Trying to log roll him is just about impossible. He has to have a bath, and we don't have our shower modified yet, so can't roll him in there. Any suggestions? And even if I manage to get him undressed and bathed, how will I ever get fresh clothes on him?

3. It's getting harder for him to manage the fork & spoon for eating, even if I cut everything up, it falls off before he can get it to his mouth. Is there some sort of tray that the base will slide under his chair and that will be higher than 29 inches? That's the best I've come up with so far, but would welcome any tips! Watching him just breaks my heart, and it really bothers him when I have to feed him....he already feels worthless and a burden, and that adds to that feeling, no matter what I say!

Sorry for the long post, but I'm really needing some fresh ideas. I look forward to hearing from you folks....always helpful and truly a blessing in my life!

Thanks,

Pollyanna
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Pollyanna. I sure hope some of the others can come up with ideas to help you out. Have you contacted the local ALSA or MDA chapters for help? Is your husband a vet? Have you tried Hospice? Things are different here than in Texas so I'm just bouncing ideas I've heard others use. I don't usually wear dressy pants unless company is coming over. The rest of the time I wear pajama pants or track pants( think you might call them sweats) They are much easier to get up and down for toileting etc. They make a slider board for the tub that you can put him on and slide him in and use a hand held shower for bath time.
Have you seen the spoons and forks you can get that have bends in them to make it easier to get food to your mouth? They also make a little sleeve that fits round the palm of your hand with velcro and it has a tight little pouch that you slip the fork or spoon into. It lets you hang on to the utensils when your fingers don't work to hold on.
Hope some of this helps. AL.
 

Pollyanna

Active member
Joined
Sep 29, 2006
Messages
38
Country
US
State
TX
City
Azle
Thanks Al....as always, great ideas. Yes, Roger LIVES in sweats and/or pajama pants, but I still have trouble pulling them up when he is sitting or lying on them, and he can't help by holding up his rear or any other part for that matter. But the last time I got him up last night, I was able to do a little better, so maybe with practice....

Haven't contact ALSA or MDA yet and hadn't thought about hospice yet. Guess I should do something before we both wind up in a nursing home room together!

After I posted my questions last night, uh, this morning...I did some web-surfing and found the spoons & forks you described. Ordered them on the spot! Thanks so much for mentioning them, because now I have confidence they will help.

Thanks again for your continuing helpfulness on this website...you're the best!

Have a good day, and stay warm!

Pollyanna
 

donnah

Active member
Joined
Aug 18, 2006
Messages
54
Reason
CALS
Country
US
State
New Jersey
City
Barnegat
Hi Pollyanna,

Here are some suggestions.... Log rolling is the only way to go but.... I used to put a large towel, body sling or mat under Ben when bathing and dressing him he was 5"9' and about 210 and made log rolling very easy. I had a friend make a large canvas sling with handles all around it to help pull him up and roll him over when in bed. I got the ideal when watching the nurses in the hospital change sheets. If you have ever seen a body board (emergency rooms, ambulances have them in them) then you will have an ideal on how the body sling should look. Eating well try this prop his elbow up on a pillow and use telephone books to prop his plate up higher. After a few tries you will find the right combination that works at your table. Ben always felt better when he could join us at the table. A little messy but who cares it was all about him. He also wore only sweat pants and Harley t-shirts. Other items I found helpful were B-Easy transfer boards, transfer belts, and a pivot disc. My recommendation is not to buy the inexpensive ones Make sure you get a transfer belt that is sheep skin lined very important. And by the way the Hoyer gets easier after a day or two I got to be a pro at it (5"7' and 120lbs) and at best you will have a few laughs crashing into walls we did. Oh what I would give to here that again. Well if you need more ideals just give me a holler. Showers never got a chance to fix the bathroom sorry


Donna
Bens caregiver 3/9/41 -12/6/2006
 

Poco

Active member
Joined
Jan 20, 2007
Messages
49
Reason
PALS
Country
US
State
Or
City
Bend
MY husband has been diagnosed for 5 months. I bought the curved forks and spoons but he cannot raise his arms enough to get the utinsels to his mouth so I feed him. He drinks ok with a straw but I was advised not to use a straw due to aspirating, but ok so far. I bought buttoned pj"s and zippered sweat shirts for easier dressing. I now need shorter socks to make dressing easier on him. I am sorry for everone going thru this and am so glad I found this site because I have so many questions too. He is getting very depressed with each loss of a function, and we are not at the wheelchair stage yet.
With loss of use in arms and fingers I am not sure wht gadgets will work.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
When in doubt Poco just ask. We'll help if we can. AL.
 

lcarlile67

New member
Joined
Jan 28, 2007
Messages
7
Reason
PALS
Country
US
State
MO
City
Wheaton
polly

my husband also has ALS - Was diagnosed Sept 06 - he has progressed worse - last summer he was perfectly normal - now he can not feed self and I do everything for him even dress him, - he weighs 235 - (he used to weigh 280 this summer) - he is 6'1 and I am 205 pounds and 5'1 --- I use a transfer belt to help him, from bed to wheelchair and car -- ( i probably wish I had a hoyer lift) - he can use his walker for about 15 feet to walk -- but his weakness has progressed worse each week for the past few months -- you and me are in the same boat girl -- we are small women trying to do alot of caregiving -- you need help -- have HOME HEALTH CARE come help you with a bath aid .. also with Physical Therapy and also with Occupational Therapy -- if you have not done yet get on MEDICARE NOW and file at SOCIAL SECURITY -- I used to live in Fort Worth - YOU NEED to CONTACT DR. JEFF ELLIOT at UT SOUTHWEST MEDICAL CENTER in DALLAS -- HE IS AN ALS NEUROLOGIST .... and the boss of one of my family friends who is an ALS scientist .... Also, here is some non-medical advice, you may want to start your husband on this vitamin regimin that the ALS NEUROLOGIST told us to do -- TO TAKE DAILY 1 gram of vitamin C - 25,000 IU of Beta Carotine, 400 IU of Vitamin E and 300 mg of CO-Q-10 ..... *ASK YOUR DOCTOR FIRST BEFORE STARTING ANY NEW vitamin routines* okay - also ask your doctor for some RILUTEK -- now, as far as advice for dressing - put him in t-shirts -- also in sweat pants - to take off sweat pants -- with him laying down -bend his knees like for a sit up - and grab his pants by the butt and pull off ---- to put back on, you will put on one leg at time - and pull as high up on thigh as possible - then roll him on one side and pull that side up as much over the buns as possible then roll on other side and pull up other side - and when he stands up have him stand with walker and finish pulling up --- also when going potty or to the bathroom - just have him go to bathroom butt naked because it is easier to get him dressed when in the bed -- for button up short sleeve dress shirts and for coats - to take off it is easier to take hold of both shoulders and pull down the back then get one arm off then the other side -- and yes it is a hassle -getting dressed .... -- for feeding him - that will become needed one day but for now take some PVC foam pipe insulation cut it into a 4 inch tube length and shove the fork into the hole this will give a bigger grip - you may have to duct tape it tighter to fit - *you can assist him with helping steady his arm -- while he eats -- let him do as much as he can as long as he is not exhausted - because that old saying - "if you don't use it, you lose it " -- really applies to ALS --- Each month less and less will be possible - but he should try to do what he can as long as he can .... my last word of help and hope is that IN CHRIST ALL THINGS ARE POSSIBLE --- I have met online 2 real people who BEAT ALS through the POWER OF JESUS ... They are HEALED now --- They are REAL PEOPLE ..... the one guy was on 700 club ... it is a FACT .... My Husband Joe and I are 100 % sure that God STILL HEALS PEOPLE TODAY --- we know the reality of ALS, that death is looming - BUT HOPING IN JESUS gives us peace and some hope to latch onto .... TO LIVE IS CHRIST to DIE IS GAIN . ... See, we know that Jesus forgave us of our sins - and Jesus will forgive anyone who asks him no matter what sins they done ...- and that to die is to go to heaven in glory == and to wake up tommorrow on the planet earth is really the worst thing that can happen to us --- yet we still ask GOD to allow him to wake up alive on earth again each day === But think about it - there is a home in GLORY with GOD to all who believe on the Son of God for Salvation - At least that is what the Bible promises .... And that is what we choose to believe --- and it is better than believing nothing at all ... PALS NEED HOPE ... and there is a sure HOPE in Jesus ..... Just believing makes the hope feel alive in the heart ... the peace is wonderful ... there is no fear of death ...
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
home health care

my late husband died 1994 of lukemia. about 3 months before he died, his doctor ordered home health care, which did not cost us a cent. they came in daily, bathed him, mostly bed baths, a nurse came once a week to draw blood. i also was able to get a hospital bed at no cost via order from his primary care doctor.

now, i am going through all this again. my husband of 6 years has als, and at this point can dress and undress himself although he has to sit on a stool to do so, he can feed himself, and walk short distances with a walking stick.

i will ask his als doctor at some point to order home health for us as there is no way i can lift him, feed him, bathe him, etc.

i want all of the members here ( i am very new) to know that when i say 'i know how you are feeling,' that i mean every word of it. this disease has taken over our lives, and we both realize that our lives will never be the same again.

this will be the second husband i will have to bury, and i am only 69 years old. i would like to hear from other members and know i have your support and wisdom to count on.

jackiemax
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Jackiemax. I am glad you found us. Looks like you are going to both need support and be able to provide support what with all you have gone through and and are going through. I just wanted to say welcome and I am sorry for your husband's DX. At six years you two are still almost newlyweds! Regards, Cindy
 

edna may

Active member
Joined
Dec 13, 2006
Messages
66
Reason
PALS
Country
US
State
orange county
City
laguna woods
Edna May

Hi Jackiemax Welcome, I think you have found the right place, I am faiirly new too & have so much help just from readimg. Q&answers,I am interested on answers you get because I am at the same stage as your husband. good luck EM
 

terri

Distinguished member
Joined
Jul 7, 2005
Messages
126
Hi Pollyanna,

About the only thing I can add to all your helpful replies is how we managed the bath situation. For less than $100 we rented a machine that would cut a round hole into the concrete foundation by the tub. We had a iron cylinder cup made to fit inside. This is just a little larger than the post of the lift. I then lift the post of the Hoyer out of it's stand and put it in the hole. I can then transfer him from his Permobil into the tub and then out and back into his chair. It's a manual job but doable for us.

Let us know anything that you find that works. I'm always looking for ways to make life a little better.

Terri
 

edna may

Active member
Joined
Dec 13, 2006
Messages
66
Reason
PALS
Country
US
State
orange county
City
laguna woods
HI Jackiemax I have been thinking about you! you have had your fair share of grief and care giving. Both Husbands are very lucky they have had you at their side, it is so important to have a caring spouse, I am lucky to I have my hubby Jack. Sending good vibes to you. EM
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
thank you em

i am a firm believer that if God takes you to it, He will see you through it.

i try and hang on to that each and every day. some days i do fine, other days i am a total wreck. thank you for posting. we are all in this together, and we need to lean on each other.

God bless.
 

Teej

Active member
Joined
Sep 28, 2006
Messages
39
Reason
Loved one DX
State
CA
City
San Jose
Sometimes the changes happen a bit quicker than our ability to adapt to them. We started with Physical Therapy, Occupational Therapy and Speech Therapy within months of my husband's diagnosis. They have all been invaluable to us. They will teach you how to properly do transfers (tiny people can transfer larger people if they use the proper techniques, which involve using the other person's weight quite a bit). Occupational Therapy has provided us with doodads to put on the utensils, toilet seats to add on to the toilet, transfer boards, slings, mattresses, seat cushions, etc., Speech helps with eating, communication software, etc., Physical Therapy has taught me stretches and exercises and counsels me on when what he's doing is too much. They teach you how to think differently now that your loved one is in this position... It does take time and research to find a Physical Therapy dept. at a hospital that is familear with ALS. Make sure it's not a Sport's Medicine speciality place, or some other type. Make sure they are specialists in Motor Neuron Illnesses. It will take research, but it's well worth it to have a good team. You are in my prayers! Blessings, Teej
 

JACKIEMAX

Distinguished member
Joined
Jan 22, 2007
Messages
159
Country
US
State
TN
City
Baxter
my first real scare, and what a scare it was....

About one am this morn. my husband sat up in bed and said 'something's not right'. i asked what was wrong and he said 'i can't seem to breathe deep enough, although i am on oxygen.' against his protests, i called our neighbors and his cousin, and they took us to the er.

the doctor there spent a lot of time with us and explained things thoroughly to us. we have not been used to that with doctors so far. they took a lung x-ray and found that his left lung was over half -way collapsed. then he ordered antibiotics to be started immediately to ward off pneumonia.

he also gave him an inhalor to use whenever he needed it. we are going to ask his pulmonary dr. if he will order home health for us in order for someone to come out and give him the breathing treatments with the medicine. they gave him one at the hospital and it brought him out of the bad shape he was in.

the dr. told him he needed some kind of ventilator, and not a bipap at this time. we are to see our pulminary dr. asap, and our als specialist on the 23rd of this month.

we are glad we went to the er, although we lost 5 much needed hours sleep because we learned of the collapsed lung.

thanks for listening. you are a wonderful group.

jackie
 
Status
Not open for further replies.
Top