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LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
421
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
Hi, everyone. I haven't ben here in awhile. My mom has bulbar onset als and has ben in the hospital with pneumonia for 4 weeks. She is now in a nursing home for rehab. They did a trach and she will be on vent support at night and maybe some daytime too. She will be coming to live with my husband and I and my Dad too. We just bought a house while she was in the hospital because I can not let her live in a nursing home. She is doing well. She has had a peg tube since August of last year. My question is, how do you deal with cooking for others and having to eat in front of those who can't. I cannot eat in front of my mother. She tells me she is fine but I just can't do it and now I am going to have to take care of her and cook for everyone. I gues I am just looking for ways to cope with this...for me and for her.

Laura
 
Laura,

First I am so sorry your mom has been so sick and is undergoing rehab. I hope she is feeling better and released soon.

You have made quite a commitment to bring her home with you. You and your family will need to eat so this is going to come up. My Dad has had his PEG for about a month and this is something we are actually adjusting to now. We take our cues from him. He is essentially not eating anything at this point but an occasional treat because he too recently had pneumonia and he is very worried if he eats or drinks it will happen again. Today we played Texas Hold'em (he won drat!) and my daughter made hubby, Mom and me a snack. She used the a paper plate to draw my Dad a snack on. He appreciated being included and pretended to eat the plate. He made us feel better and I love him for that.

We live next door to my parents and frequently shared meals together in the past. It is hard and I do feel guilty. It is just not fair but he says he understands and I believe him.

Good luck with bringing your mom home.
Dana
 
Hi Laura;

Mealtimes are always difficult when one person can't eat what everyone is eating. Or if they can eat it it takes so long that everone else has long finished. I know that in my house it is much easier since I got my peg tube. Now I can take a small portion of what I can eat and I don't worry about the rest or keeping others waiting. It's just something that we've all gotten used to. Can your mom eat anything by mouth? Is there anything that she can eat along with you and others? It could help make it less awkward if your mom had something that she could eat so she doesn't feel left out.
I hope that you can make it work, good luck!
 
It doesn't bother me when friends or relatives come over and have something to eat while I'm at the table. With the tube, I have my meal earlier and just enjoy the company. I would take your mother's word that she is fine with the situation, Laura. Being with her loving family is the important thing to her, I'm sure.
 
Hi, can you tell me how your onset first started. I have just been diognosed with Bulbar and I have slurred speach and some trouble swallowing. I can tell my speach is getting worse each day. It was only in the afternoon 3 weeks ago. I now start in the morning. It seems to me that is pretty fast? I have trouble at night swallowing. Can't lie on my back at all. Feels like my throat is closing up. Sure wonder what tomorrow will bring? Lin
 
Hi Lin

My speech first started to be slurred in July of 2007. At that time it was only when I was tired or had a couple of beers but it has gotten progressively worse from that time going from slurred all the time to slurred and hoarse sounding. Now very few people can understand anything I say. My wife is the best at it but even with her I have to repeat part or all of a sentence or I just give up and use my Dynavox.

I too can't lie on my back to sleep but I have always slept on my side anyway so that's not a problem.

As far as the speed of progression is concerned, no one knows how fast or slow it will go. When did you first notice symptoms?
 
Hi Lin

My speech first started to be slurred in July of 2007. At that time it was only when I was tired or had a couple of beers but it has gotten progressively worse from that time going from slurred all the time to slurred and hoarse sounding. Now very few people can understand anything I say. My wife is the best at it but even with her I have to repeat part or all of a sentence or I just give up and use my Dynavox.

I too can't lie on my back to sleep but I have always slept on my side anyway so that's not a problem.

As far as the speed of progression is concerned, no one knows how fast or slow it will go. When did you first notice symptoms?

My mother has been dealing with the slurred speech for about 6 months. It has recently become very difficult to understand her. She has an appointment tomorrow with a therapist. I want to be sensitive to her trying to communicate but i'm not sure when it's best to keep guessing or if it is insensitive to ask her to write it down.
 
Hi Marose,

I find that sometimes guessing works but writing, while slow, always works and can save both your mom and you a lot of energy and frustration. It has been very difficult for me to come to terms with the fact that people can't understand what I'm saying and I know that I haven't always been the most gracious or patient with others. I have several communication devices ranging from my $5000 dynavox to my $1.99 spiral notepad and I use them all, whatever I have with me and works for the situation. Make sure that you get as much information from the speech therapist as you can about the types of communication devices, costs and funding for devices as well as communication tricks, tips and strategies that your mom (and you) can use to help her make the most out of the speech she has left.

Good luck and I hope that your mom gets the speech help that she needs.

Barry
 
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