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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!
 
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.
 
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!
 
making amends

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
 
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/Resou...=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!
 
Update on my DAD

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!
 
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
 
This is only a test...................

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
 
Hey Irma yah passed the test!Did you study for it!...lol
 
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
 
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
 
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
 
visits to als patients

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
 
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
 
Hello everyone update on Dad!

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
 
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