How do you know when.......

[Amanda529]

Just this week my dad has been having problems with his hands. He has a hard time buttoning up shirts and on Sunday the cashier gave him change back he dropped the coins on the counter. To me it looked like he could not control his hand. I personally think he is losing his motor skills in his hands is there a way to tell this? He is now at the point you cannot understand him. I am waiting on a call back from his ALS doctor to find out how you get a communication device. It breaks my heart to tell my dad each day I can't understand him because I know it makes him mad. You can understand him at first when he talks and the more he talks he mumbles and all the words run together. I have said this before I hate this disease and it is so evil. I would not wish this disease on anyone!!! This is really affecting me a lot because I hate seeing my dad this way!!! I am my dad's girl even though I am 27 I am still my daddies girl!!!! My doctor just recently put me on depression medication because since he was diagnosed on 8/8/07 it really has torn me apart I have been a nervous wreck and my emotions are so high. I lost my best friend Trevor in 8/04 and I thought that was the toughest thing I would ever go through boy was I wrong!! I just don't know how to stay positive when I know he is slowly going down hill and is going to eventually die. I honestly don't want that day to come for years but I know that will not happen. Okay I did a lot of venting thanks for listening. God Bless!!

[Icanmanz]

Amanda, I will keep you and your dad in my prayers. I know it hurts, the best you can do is live each day to the fullest. I know the feeling of "wanting to stop the clock." God bless you and family!

Irma

[Gina]

Hi Amanda,im with you i hate this damn cruel disease too!!!!My husbands hands are like your father`s by the sounds of it.When he was still driving and we would go through a drive through i would have to lean over from the passanger side and give them the money and get the change as also it became difficult for him to hold in his hand without dropping it.Any fine motor skills are very difficult for him and we try to work around it the best we can.The als clinic gave us some sponge tubes that fit around a pen or his eating utensils which does help so you might want to see about that for him when you next go to the clinic.I am so sorry that he is having such difficulty speaking and you understanding my husband does not have that problem,thank god,his biggest problem is of the resperatory nature.My daughter is just a little older than you and she too is a daddys girl i feel So bad for you and her.She hurts so much too and i wish i could say something to make you both feel better or make this stop!Just keep venting whenever you need to and we will be here to listen...God bless all the children of als and especially the ones that are the caregivers.....Gina

[JenniferS]

Is you dad seeing a speech therapist through the ALS clinic? My dad, who was diagnosed about 9 months ago, can be understood about 25% of the time. the rest of the time he writes or uses a communication device that is a keyboard that talks. His speech therapist helped him find one that is right for him and I think medicare pays for it.

Jennifer

[Amanda529]

Yes, my dad is seeing a speech therapist at the ALS clinic. We are schduled to go there again in April.

[Clbrink]

Speech therapy has made a big difference for my husband.

Try taking it one day at a time, enjoy what you do have!

I was always daddy's girl too, my dad is in SA, I'm lucky if I see him once a year!

Tina

[Amanda529]

My dad went to speech therapy from January- May of this year because at first they thought he had a stroke. But the speech has never helped at all. I am taking it one day at a time but it is extremely hard for me to not think about my future and that i will not be sharing it with my dad. :cry: Thanks for everyones replies i appreciate everyones help!!

[CindyM]

Hi Amanda- don't let yourself thing too far into the future. Easier said than done, I know. Try to enjoy the time you have together right now. It is a trite saying, but I can;t think of anythign else to do, can you? :) Cindy

[Amanda529]

Hi Amanda- don't let yourself thing too far into the future. Easier said than done, I know. Try to enjoy the time you have together right now. It is a trite saying, but I can;t think of anythign else to do, can you? :) Cindy

Hi Cindy! Thanks, I try not to think so far into my future but it is not easy. I do enjoy the time i spend with him. I wish i could spend more years with him but i know God has a plan for him. I just dont know how to cope with this when i see him each day and i witness him going down hill. I stay strong when i am with him but once i leave i can't handle it.

How do other caregivers cope with this situation watching a love one slowly go down hill and knowing you can't do anything to help them? Please i need some advice on that to help me through this!!!!

[Gina]

Hi Amanda,I wish their were something that i could say that would make this easier but the truth is this is just one hell of a nasty disease.I think we all struggle with that feeling of helplessnes .Thier are some days that are just so hard and you think you will never get through them but somehow you do...because well you really dont have a choice.I am so sorry that you are having such a difficult time coping right now!I hope it helps to know that you are not alone and given the situation your feelings are perfectly normal...Please feel free to vent anytime you need to we are here to listen......Gina

[jackson]

Amanda - I am hoping that I can reach out to you. My mom was recently granted the ALS title also and in 10 months I have seen my once vibrant mom go so far down hill - I cry at the drop of a hat - not a day goes by without thinking what am I going to do without her! My heart broke when I read your posting - knowing that I feel the exact same way - somehow it gave me peace to know that I am not alone! My parents live in Northeast Ohio, almost PA so I even feel close knowing you are from Ohio also! I too am not sure how to make it through - I try not to ask my mom to repeat herself and I wonder when I hang up the phone if it will be the last time I hear her voice! I have yet to go try to get medication for myself - I think I am just fooling myself thinking I can make it!! It is just torture to watch the decline I agree - I feel as though I am being a downer when someone asks about my mom and I just break down on them - I too am strong when I am with my mom, but my drive back home - approximately 1 1/2 hours is pure crying!! My kids see me crying all the time, my husband just knows now - I am willing to lend the ear and shoulder - I do know how you are feeling - Jackson

[Amanda529]

Hi Jackson! Thanks for the reply. I know I hate to ask my dad to repeat himself and I also wonder when I hang up the phone if it will be the last time I hear his voice! Personally i would recommend going to your doctor and explain to them what is going on and you are battling depression as a result. The medication has helped but i still have my breakdowns at times but i am not as bad as i once was. I am here if you ever need to talk along with everyone on here.

UPDATE ON MY DAD:
Two weeks ago my dad received a communication device. Tomorrow he is getting the PEG tube put in and i am praying all goes well. I will let you all know how it goes. Thanks and everyone have a MERRY CHRISTMAS AND A HAPPY NEW YEAR!!! May god bless you all.
Amanda

[Rachel]

Hi Amanda

Great news about the communication device, it should make life much easier for you and your dad. My mum used her lightwriter as her voice for the last 6 months of her life and my only gripe was (no offence!) it had an american accent :-D Only problem was, my mum's spelling wasn't too good which made for some great pronunciations at times!

Good luck with the PEG, hope it goes OK.

My advice for coping is to take each day at a time, tackle each challenge as they come along and cherish each moment you have. To think too far ahead just destroys you and takes your mind away from the present, which is the most important time for you and your dad.

Have a great Christmas & peaceful New Year.

[CindyM]

Good luck with the peg today, Amanda. Tell Dad we ae rooting for him!

[JACKIEMAX]

hello all,

i wish i could give some advice about 'coping', but i cannot. some days the only way i can get through the day is to 'pretend' we are normal, and he is not sick. that worked for awhile, but now he is declining rapidly. i am having to help him with very personal hygiene situations, i switch his oxygen /bipap about a dozen times a day, i have to be in the room with him 24/7 in case he chokes, sometimes on his own saliva.

he can still talk to me, but his voice is very weak. he tried to stand and use a urinal the other night and fell. picking him up was dead weight, and scared us both. next time he falls, i have been advised by his home health worker to call 911 immed., so they can help him up and check him out on the spot.

also, i rec'd a very very ugly e-mail from his brother in oregon today accusing me of trying to isolate him from his children and family bec. i wrote them all and asked that they shorten future visits due to his getting so tired easily. it was a very ugly and hateful e-mail. yet, not one of them have offered to come here and help take care of him, bring some food, and none sent him a x-mas gift. had it not been for my family and me, he would have had nothing under the tree.

thanks for letting me vent. my heart is broken in two, and i relate to all of you.

jackiemax

[jackson]

Amanda -

Thanks so much for your reply - sorry it has taken so long to respond but the holidays have been hectic. It was a rough holiday to get through - but good in a few ways - my brother and I with our families ended up in Ohio for a weekend with my parents and I know my mom surely enjoyed that - also my mom made the trip to our house for Christmas with my kids. As rough as I know it was for her - I know she did it for my kids sake! It was hard during her stay to have to help and assist with things that we all take for granted - I was deeply saddened when they left as she cried endlessly as I know this was her last trip to my house. I do believe within the next week she will be into a wheelchair - I want my parents to ask for help very soon as we had a hard time getting her into bed in the middle of the night when she got up to go to the bathroom - they need some type of lift assistance...I think I might be going to stay as often as I can to help my father. I went to work yesterday and did really good, I only broke down twice and it was after I left work - people have got to think I am a blubbering idiot!!!!

Please see tell me what type of communication device your father got and please explain the PEG?! How do you find out about all this? It is soo overwhelming to me! This is the most horrible disease that I could have every imagined!!

[CindyM]

Hi Jackson- if you are in PA there is a great ALS clinic at Hershey. You might ask to visit the support groups they run. The clinic and\or local MD chapter have all srots of information, loaner eguipment, and refereals to services. If your Mom is not registered, she might want to do so.

[CindyM]

Jackie- terminal illness brings out both the best and the worst in people sometimes. Your BIL's ugly email is an example of how fear and anger can overtake a person. It is sad that he directed these feelings at you. We, on this board, know how much you do for your husband and I am sure he does too. I hope you can forget the harsh wrods for a bit and try to do something nice for yourself. You deserve it!

[JACKIEMAX]

hello all,

i have written apologies to all of his family members that i spoke so ugly to via e-mails and phone. they all understand and have forgiven me. i have a tendency to 'stuff' my feelings, and then i let it all out. i spoke harshly to several of his family, and regretted it. he loves them and they love him.

my favorite hymn is 'let the beauty of jesus be seen in me', but i sure let the lord down lately. i hope that ugly person never surfaces again.

i think horace is in the late stages, and i'm afraid he won't be with me much longer.

jackiemax

[Amanda529]

Hi Jackson!
Our christmas was great. Dad told me a couple of days before christmas that he thought this was his last christmas with us. I hope he is wrong!! I also believe within a couple of months my dad will be in a wheelchair to. I know what you mean about your parents asking for help. My dad is a very stubborn man and will not ask for help when he needs it. He never tells me the lastest things that are going on with his body i always have to ask him questions then he will tell me. My dad fell in the bathroom on 12/30/07 and hit his head on the heater in there and he didnt tell me untill 12/31. Honey, you are not a blubbering idiot!!!! Let people think that who cares what they think. Your true friends and family understands what is going on. I felt the same way after my dad was diagnosed now i dont care what people think. Keep your head up!
My dad got a communication device that looks like a little computer and you type what you want to say on it and you can also save sayings or words he uses alot and the device will say it. It's pretty cool. Where exactly do your parents live? My dad goes to the Cleveland Clinic in Cleveland and meets with the ALS team there. They are all great. There is also a ALS assocation in Cleveland that has a lot of information, loaner eguipment, and refereals to services that has helped me and my dad. I would sugest going to the ALS association website and looking where the closet chapter is to your parents house and contact them for help. http://www.alsa.org/

The below information was taken from: http://www.alsa.org/files/cms/Resources/FYI_Feeding%20Tubes.pdf?CFID=5401416&CFTOKEN=51bbe54-25329c0a-aaeb-47e1-bb64-b8ff49f16d0a
PEG Tube
The percutaneous endoscopic gastrostomy (PEG) tube is currently used more often. The tube is
approximately 10 inches long. A long endoscope (instrument) is passed through the mouth and down
into the stomach. This feeding tube is threaded down and out through an opening in the abdominal wall.
Some physicians use a simple method that doesn’t involve an endoscopy. One of the strongest advantages
of this method is that usually no general anesthesia is needed, only heavy sedation. With a skilled
physician, this procedure can be done quickly with few problems. You may be able to come home the
same day. Problems with initial feedings can be dealt with by experienced personnel while in the hospital.
It is important that patients and caregivers feel knowledgeable and confident before going home.
Arrangements can be made for visits by home care nurses until you feel confident.
Some of the problems with PEG tubes include aspiration pneumonia (fluid gets into the airway and
lungs, causing infection). Gastric reflux and aspiration can be minimized by close adherence to elevating
the head at least 45 degrees during and after feeding, for a period of 30 to 60 minutes. Liquid medications
rather than crushed pills are preferred given through a PEG. Bulk-forming agents such as Metamucil
should not be given through a PEG tube. Blenderized foods may be used if they are able to pass through
the eyelets at the end of the tube. Have your doctor show you a tube before he inserts it. Careful routine
flushing with water is a necessity to keep it from clogging.

I personally have doen alot of reserach about this disease from the ALS.org website. I would recommen going there and reading some of the onformation. If you have any siblings i would suggest they also go read about the disease. It doesn't hurt to know alot of informtaion about this disease it will help you. I totally agree that this is the most horrible disease that anyone could have every imagined!! If you ever need any thing let me know i will help you. I am here to if you need to vent or talk. Take care of youself!!

[Amanda529]

My dad is home and the PEG tube is in and he still has a little pain left from that procedure. My dad is talking about getting a one floor aparement i told him that would be the best thing for him at this point. He fell on sunday night in the bathroom and hit his head on the heater my uncle heard him fall and went in there to check on him. Other then that he is doing okay! I hope everyone had a great christmas. Talk to you all later!!

[Gina]

Hi Jackemax,i am so sorry you are having such a difficult time coping right now!!!The fact that his family are willing to add to your misery is unreprehencible!I can only imagine how much more painfull this is making an allready extremely stressfull time you are having in trying to give your husband the best of care.My husband cannot be left alone either and i find this so hard to cope with at times .He requires a lot of care and sometimes i just get so tired and then i get oversensitive....i definately am not saying you are being overly sensitive in fact it is more like his familly is not showing any sensitivity at all in yours and his situation.Some people just will NEVER get it !!!Anyone who can send such an Ugly email to you at a time like this certainly has to have a lot of ugliness inside!Keep on doing the best you can b/c it sounds like you are doing a wonderfull job.....take care &prayers your way......Gina

[Icanmanz]

Hi friends! I started having probs with my other computer, so I took my son's extra computer and hooked it up. It wasn't easy without instructions. Wasn't that bad though. This is only a test, because it wouldn't let me post a little bit ago. Thank God I got it going!

Irma

[Gina]

Hey Irma yah passed the test!!!!!!!Did you study for it!...lol

[ScottishKiwi]

Hi,
My husband Alan is also in the latter stages of MND - he was diagnosed in Feb 06 although started having symptoms in Oct 05. He progressed from his hands and arms being affected first and is now bedridden in a convertible wheelchair as he cannot stand. He chokes a lot on his own saliver but our doc prescribed an eye drop to dry up his mouth and it has been a huge help, and I also have to "burp"him like you would a baby. His speech is very faint at times so his breathing is getting weaker, and he needs 24/7 attention.
I went thru' a grieving process in the first 6 months or so, crying a lot and wondering how I was going to cope, but our local hospice and medical staff have been wonderful with visits and advice and general help with wheelchairs and cushions etc. We have a caregiver come Mon - Fri for 4 hours to do all his personal hygiene which also means I can go out to do the shopping or just go for a coffee somewhere for a break.
I have also found comfort in reading books about spirituality - I'm very openminded about all sorts of religion and feel that this has helped me deal with our future and the inevitable outcome of his condition. I am truely grateful all our family and friends have been supportive and understanding of his condition and although no-one lives close, we receive phonecalls and cards on a regular basis, and visits periodically. Anyone visiting understands that if Alan needs to use the commode then he needs people to disappear from the room for a while!!! Alan has been a tower of strength for me in his acceptance of his condition and making the best of life whilst we still have it - he still manages to joke although it takes a bit longer to get to the punch line. I hope you find peace and strength in the coming months.
Kind regards,
Ang

[CindyM]

Hello Ang and welcome to the forum. I am sorry to hear about your husband, though it sounds like you both do your best under trying circumstances. You are so right about the positive attitude. Being negative definately makes a tough situation worse!

That said, we all have our moments, Jackie. You are right that bieng tired and out of touch with ourselves probably brings these moments out. I am glad that you took charge and decided to make amends. Your brother in law, if he lives a ways away from you, might have been feeling helpless and frightened by all that is happening. In the future, I hope he finds a bvetter way to cope than blaming you. :) Cordially, Cindy

[jackson]

Amanda and Jackiemax - Hello again! Thanks so much for the info on the PEG, I didn't realize it was that kind of feeding tube. I feel so bad when I read about your dad falling, my mom too has fallen so much since probably August - even down the basement stairs backwards from the top. Just recently two weeks ago, she fell in the living room breaking her collar bone - now forced to the wheelchair. I only hope that in four more weeks she might be able to re-use the walker although I am somewhat doubtful. They have home health coming in to assist her and I was up again over the weekend. My mom has gone to the Cleveland Clinic, however I was not overly impressed. We went on December 5th and the ALS clinic was suppose to call and set her up - they never called so after the first of January she called. Whoever the girl was that answered the phone was a complete moron. Granted there are days were it might be more difficult to understand my mom, she is still pretty good at communicating and the girl was disheartening and rude telling my mom "I need to speak with someone else - I can't even understand you!" Had I been there when my mom called I would have drove up and made sure this girl didn't have a job anymore!! Again, needless to say they haven't returned the call and set up any appointments?!? Anyways, I took the day off work recently and drove up and took my mom to the Seneca Casino - we had a wonderful day with lots of laughs - I was exhausted from pushing the wheelchair on carpet floors all day - but like you know - you've got to keep making memories! I am so glad I took off work!

Jackie - It is difficult on some days to deal with the family! The taxation on the caregivers is more than anyone can know. My mom has people coming to the house all the time now to visit - I have aunts and cousins that I think are playing the guilt card trying to get into heaven now. What people don't get is that it is quite tiring - my mom won't let me say a word - afraid it will hurt someone's feelings - meanwhile we're exhausted and don't feel like entertaining. I don't have a problem with her good friends, they have been wonderful in stepping up to the plate bringing my parents food and helping with various things. I am going to find that sign - Friends welcome, family by appointment only! Take care!

Jackson

[JACKIEMAX]

jackson, i just read your post, and you are sooooo right. people drop by and horace usually has, or always now, a bi-pap mask on, and they can see he cannot talk, and they see the circles under his eyes and how weak he is, and they chatter, chatter, chatter, but like someone else said, he won't let me say anything to them.

that is how this mess with his brother and daughter started. i wrote and said long, quality visits are too late now, and they got all up in arms saying i was trying to isolate him from his family. i begged them all to come earlier, knowing he was getting weaker, but they ignored me.

now, it wears us both out for visitors. only my church family brings food. not family, just church family.

jackiemax

[CindyM]

Jackie- i am so glad you have some caring folks to help out. You and Horace deserve it. Someday the family will face their decisions, and no amount of talking to them now will change that fact. At least you will have no regrets for how you are helping Horace. Cordially, Cindy

[Amanda529]

Feeding tube surgery went well and he is still able to eat regular food so he is not currently using the tube. It is there for when he really needs it.

On January 27th, my dad came home from grocery shopping with my uncle and was carrying a bag of grocery in is left hand and had his cane in his right hand. He was in his living room of his apartment and fell face first onto the floor. Their floor has carpet and underneath that is concrete. Anyways when he fell he did some damage to his face because he hit the floor with all of his weight on his face. My uncle took him to Fisher Titus in Norwalk but he was later transferred to University of Toledo Medical College (UTMC). My dad has suffered a broken nose and has fractured his face as a result of the fall. He also has two black eyes as a result of the broken nose. They had to put some balloon things in his nose to stop it from bleeding because it was bleeding pretty well. He threw up blood yesterday 5 times that I am aware of. When I got to Fisher Titus yesterday with my fiancé to see him we went back to the room and the curtain was open a little so I was able to see him but I physically couldn't go in to see him I took one look at him and started to cry. He was covered with so much blood at that point they were trying to get it to stop bleeding and was starting to clean him up. It broke my heart to see my father that way. My dad was bleeding so much because he is on blood thinners.

Dad is home and is staying with my sister because someone needs to watch him 24 hours so he doesn't fall again. We take turns watching him. He is doing alot better since his falling accident. He has alot of follow up appointments that he has to go to within this month and next.

My dad and I have a very close bond. We have become very close once I grew up. I love my dad so much I hate to see him like this and in this shape. I don’t want to loose him but I know God has a purpose for him. My life will change when he passes away. I keep hoping I would wake up from this dream but I know everything happens for a reason. I hate watching him suffer. Sometimes I just want to tell him when you get tired of fighting this disease please go home with the Lord because I don’t want you to suffer anymore. This sucks big time!! I hate this disease big time!!! I wanted to give you all an update on what is going on.

God Bless!!
Amanda

[CindyM]

Hi Amanda- glad the surgery went well but sorry the fall took him down again. Thanks for the update. I hope he is feeling a little better by now...Cindy

[hboyajian]

Amanda, perhaps a 4 wheeled walker would be helpful to your dad. This would provide support while he still maintains the ability to walk around his house independently. The ones with a built in seat also allow for sitting down to rest wherever you are. One of these kept my dad going for 2 years when walking was increasingly difficult but he was not quite ready for a wheelchair. The kind he had was an indoor-outdoor walker with 5 inch diameter wheels, hand brakes and a basket for carrying things along, like that bag of groceries.
I hope your dad is recovering alright from his fall.

[hearts_and_thoughts]

Hello Amanda,

I believe we are near each other in Ohio. I'm in Burton which is Geauga County. Sorry about your Dad. I hope he is doing ok at home. Do you guys have enough support at home for him?

We think my father died of Bulbar Onset ALS back when I was 4 years old. Please feel blessed for having a life time of experiences and memories to look back on when he passes on and make sure you spend some happy times together now as much as you can. You want to remember the smiles, not just the disease. That is what I think about when I think of my sister who also died of limb onset ALS, the smiles at the end of her life. She was a trooper.

Again, I hope all is well.

Sincerely,
Mary Jo