Old 12-29-2007, 10:59 AM #1 (permalink)
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Season Greetings to all. Almost every morning I try to read the latest threads, it's helps me stay grounded and with it instead of feeling like I am floating through a nightmare by myself. To know that you are not alone in your struggles is truly a comfort. Our next wave of company is here then they leave and the next arrive and so on for awhile sos chin up deep breath and I will survive this as well. Well meaning as everyone is it is more work for me and more stress on my husband and there is nothing worse than having family members show up thinking they know more and I am not doing it right. Friends who ahve not seen him in awhile thinking I am keeping him shut in instead of letting him live the most don't understand how far along he is and that he really can't do these things anymore. The biggest problem at the moment is getting him to discuss his living will and to get a DNR. He says that I will know what he wants which is true but I also know that there is family who will diagree with it and I want it in writtting, also he is thinking of not using a feeding tube, has anyone else refused this? Thanks for letting me rant and I hope the new year brings lots of love to all.
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Old 12-29-2007, 12:43 PM #2 (permalink)
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Hi givenin, my name is Jose. First I would suggest you to change your username,I could give some suggestion as follow: nevergiveup, nevergivein,you should never give up and you should never give in.
I was diagnosed with Bulbar type ALS. At the present time I can hardly talk,I am unable to breath so Im on a BIPAP at night and I can't swallow effectivlely,I choke on water and on anytghing that I put in my mouth.
Neverthelless,I have clearly written on Living Will that I refused heartly,radically,to have a feeding tube placed on my stomach,neck or any other part of my body.I also refused to trached.I just don't want any holes or tubes going into my body. Don't ask me why because I just really hate the idea. I think of it as putting a burden on top of a burden for my family.and besides,none of this procedures is going to make the disease better or prolongue my life is only going to prolongue my sufferings.
As far as getting everything ready for when my time comes,I have Will,Life Insurance etc and everything is in order and under the name that it should be,the mother of my 15 years old son and my son. We are not married,but everything, my house and all will be theirs when I am gone.Tell me more about your husband please,I have a perfectly normal life myself.I go the movies everey weekends with my son,we go shopping,I make love to my wife etc and I can't talk, I can't swallow, I can't eat,But I stand strong.
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Old 12-29-2007, 02:09 PM #3 (permalink)
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Hello givenin,I know excatly what you are talking about concerning the living will.Does your husband realize that if you for any reason have to call an ambulance or paramedics they will give him cpr.,or may put him on a vent or any other measures to prolong his life.If you do not have that dnr in your hands then lets just say it is out of your hands because that is the paramedics job.Maybe if you explain this to him he may change his mind about the living will as it is the only way to assure that his wishes will be followed!
Concerning your company i truly know what you mean !Landscape posted a thread about Caretakers rules that were very helpfull...i sent an email out to all familly members with email addresses asking that if they come to visit they come between certain hours and limit their visits to an hour or so....My husband who has had als for 4 yrs now tires very quickly and i am often so exhausted that i dont feel like entertainig at all....of course i do for his sake but it does take a lot out of both him and I! It is a tough job being a caretaker and especially when you dont feel appreciated and are being second guessed by people who dont have a clue what they are talking about.!.................I wish you all the Best and hope you get some rest through this busy season...........Gina
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Old 12-30-2007, 12:24 AM #4 (permalink)
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First my username is for the act of accepting my husband has ALS and no he is not copeing well with it. he does not like to go out, missed his daughters Xmas concert ect. There are battles to win and give in to and he fights what he really shouldn't, what I think anyway but I am not the one with this I can only hope to help him along the way anyway I can. Thank you for your thoughts and support and we all know we need to burn off the steam every so often. And Gina when this round of well meaning family and friends leave I will try and nail him down on getting what needs to be done. I lost my mother to a useless battle with lung cancer and am aware of how things can be without the DNR and living will but I also know evey time my mother accepted doing one of these things it was giveing in a little more to the disease and losing the battle and I see the same thing in my husbands eyes along with the fear and I worry that he will never come to terms and have some peace. I also worry about his use of the bi-pap or should I say lack of it, he won't use it at night yet and maybe gets 2 hours a day on it. I have been trying to get time to research on the web the ill affects of co2 build up and such, tried to find out when last at the als clincut was so tired after the drive there and a sleepless night am afraid I missed what was said.
Beatall if you have refused the feeding tube how is your weight with your difficulty swallowing? I also want to say I admire your refusal to stand down to this disease and still enjoy time with those close to you, good memorys to have.
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Old 12-30-2007, 07:03 AM #5 (permalink)
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I would first like to say I am so sorry you are suffering. I have said many times that there are no words to describe this disease. It is heartbreaking to have this and it is heartbreaking to watch a loved one suffer. As we live day by day with our loved one with this illness we watch the changes and feel the pain, both the one with the illness and the caregiver become totally exhausted, emotionally and physically. The love we have for our loved one is what gives us the strength to take wonderful care of them. We have a rountine every day and everyday is a painful struggle. You add on people coming to visit, whether it be family or friends and it makes it even hard, not because you do not love your family and friends but having people over can be very tiring and also emotionally draining especially if you have some trying to suggest that you are not doing things properly. There will always be someone saying oh you should be doing this or you shouldn't be doing that, this is how I handle this, when company come to visit it is lovely I ask them to stay only for short periods of time because my husband gets very tired easily and it is hard for him to talk. When they come to visit some will say can I bring something, I will say if you do not mind he loves a coffee you could bring him one. Some may say is there anything I can do to help, at that time there may be a few little things I need help with and I will kindly say what that might be. Now, when some people say to me maybe you should do this or that I say this, I for two and a half years have not had one full nights sleep, I have been constantly on the go, I take care of all my loved one's needs, I clean my home, I cook, do the laundry, take care of my our family pets, I do breath stacking, right there they look at me and say what is breath stacking, I then say to them okay there you go, I know you are trying to help but you see you do not know what that is and I would not expect you to because you do not live this disease, you stop in for a short period of time, have a visit and you make suggestions of what would be good for my loved one. Now with that said I will say to them the old saying, walk a mile in my shoes and then make your suggestions, you do not know what we do in a day to keep my loved one the best he can be. Do you know how to stand him up when he cannot stand very well? Do you know how to run a feeding tube? There are many questions I could ask. They will look and say no I do not know how to do those things, my comment is well I do know how, and as you can see he is well cared for and loved and your job is do just drop in and love him not suggest what can make things better. We love each other dearly and the last thing we need is someone thinking they know what they need when they are not here to dry the tears that are flowing, not here when they have trouble breathing. I will say as friends and family just love us, hug us because unless you live this every mooment of your life you will never know what we live. Our hearts our breaking, gently put your arms around us not your comments of what one is not doing right or what one is doing right. It is simple just love us.

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Old 12-30-2007, 01:51 PM #6 (permalink)
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Well said, Hope. I always say that caregivers are angels but the more I hear stories like those told here the more I realize that the concerns go way beyond the emotional and physicla aspects of taking care of one you love.

BTW, what is breath stacking? This is a new term to me.
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Old 12-31-2007, 11:28 AM #7 (permalink)
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Givein,

Welcome to this forum and you stay strong, you will get through all of this, believe me.

My husband refused a feeding tube for several months, until he lost 36 pounds of weight, which does not help this disease at all. I feel you need all the strength and nourishment to fight any illness especially this horrible disease.

After much denial of the disease, and the loss of weight the Doctors, myself, convinced him to try the feeding tube which is reversible. He gained back 8 pounds almost immediately and felt much better as he progressed.

My husband wanted to live so this is why he finally chose the feeding tube, and we feel this was a good decision, as he never had any bad incidences with this choice.

Concerning the living will, we had the same issues with family, but at the hospital my husband changed it due to the feeding tube information and it worked out alright. It is a good idea to have everything in writting, but it will be alright, believe me. The hospital here, offers living wills at no charge, so we can change it upon admission to the hospital, which is convenient and does help in decisions later. Check with your local hospitals on this.

Though these are difficult times, just hang on to these precious moments with your loved one and it will be alright.

Hopefully, one day we will find a cure for ALS and many other diseases that are destroying lives.

Hugs,
Caroliney,CALS

Last edited by caroliney : 12-31-2007 at 11:36 AM Reason: Add information on living will/correction.
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Old 12-31-2007, 06:12 PM #8 (permalink)
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Hi Cindy,

Breath stacking is an effective way of maintaining pliability of the chest wall when one’s own muscles can no longer expand the lungs. It is usually accomplished by plugging the exhalation port of an Ambu-bag, and "stacking" several breaths into the lungs until the chest feels fully or even over expanded. Performing this exercise several times a day makes it easier for a Bi-Pap to do its job, and extends the time that a Bi-Pap is effective. I was able to use a Bi-Pap 24/7 for two full years before having to move to a ventilator.

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Old 01-01-2008, 09:44 AM #9 (permalink)
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Thanks, Mike. And Happy New Year to you and Jen and the family!
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Old 01-01-2008, 07:19 PM #10 (permalink)
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Quote:
Originally Posted by quadbliss View Post
Hi Cindy,

Breath stacking is an effective way of maintaining pliability of the chest wall when one’s own muscles can no longer expand the lungs. It is usually accomplished by plugging the exhalation port of an Ambu-bag, and "stacking" several breaths into the lungs until the chest feels fully or even over expanded. Performing this exercise several times a day makes it easier for a Bi-Pap to do its job, and extends the time that a Bi-Pap is effective. I was able to use a Bi-Pap 24/7 for two full years before having to move to a ventilator.

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Hi Mike,
This is my first try at posting anything on this forum. I've just been reading. I noticed that you used the Bi-Pap 24/7 before moving to a ventilator. My husband has ALS (diagnosed Jan. 2007) and has been having more difficulty breathing through the day. He uses the Bi-Pap for a couple of hours through the day and all night for sleeping. His lung volume is low. We are exploring the use of a ventilator and all that it involves. How was your lung volume when you were still able to use the Bi-Pap 24/7?
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Old 01-02-2008, 06:52 PM #11 (permalink)
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Hi Sharon,

Welcome to the forum. My FVC was so low that they stopped measuring it (nearly zero). I think there were two primary factors that allowed the Bi-Pap to remain effective for me. First, daily "breath stacking" kept my chest wall pliable, and second, I retained control of my swallowing muscles. When I was finally forced to switch to the trach/vent, it was because I aspirated some food. After several days of my weakened chest muscles trying to expel the foreign object, I was physically exhausted, and agreed it was time to do the trach. Looking back, there was no real benefit to postponing the surgery, except the extra time to prepare psychologically.

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Old 01-04-2008, 09:32 PM #12 (permalink)
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Thanks Mike,
My husband is considering ventilation. How long have you been on a ventilator and what advice would you give to someone considering this?
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Old 01-05-2008, 01:41 AM #13 (permalink)
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Hi Sharon. If you click on Mike's name above he has a homepage that describes a lot about him.
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Old 01-05-2008, 05:21 PM #14 (permalink)
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Hi Sharon,

I have been on a vent for three years, and am living a more fulfilling life than at any previous time.

When it came time to making the vent decision, it was easy for me. I was not nearly finished living and my wife was 100 percent behind me. I was in the middle of a self-exploration journey and not ready to quit. After living two years with a Bi-Pap mask on my face, it was a relief to have that removed.

It does require a little more work, but now that it has become a part of our daily routine, it doesn't seem like a big deal. If you lived closer, I would invite you over to show you what is involved.

In general, I would say if yourself husband is still enjoying life, go for it!

http://quadbliss.com/

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Old 01-05-2008, 07:11 PM #15 (permalink)
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Thanks Al and Mike,
I will go to Mike's homepage. Thanks for providing the link, Mike.
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