Scared

[JOSIEM02]

My mother in law was diagnosed fed. 2009. She has bulbar onset. Since then she can no longer talk, eat or drink by mouth. Her peg was put in in June. While in the hospital she got Colitsis (spelling) 16 days later she came home. She was doing OK for about 2 weeks then she became dehydrated and malnutritioned, 4 or 5 days later her body swelled and they told us she had Colitsis Cdiff. They finally decided they weren't capable to take care of her and air lifted her to Hershey Medical Center. They are wonderful. They removed part of her colon and now she has a Colostmy bag, she has been in a nursing home for about a month now trying to rebuild her muscles. She has lost so much weight. We are not sure if the muscle loss is due to being bedridden for so long or if it is the progression of the ALS. She can't even take the cap off of a marker, or even pull a card out of an envelope. My husband and I are in the process of buying the house she now rents so we can help take care of her. I am so scared of when she comes home that I won't be ready or able to do this. One thing that will probably sound dumb is since she can't eat I don't even like to drink infront of her how will I beable to cook there. I know she will beable to smell it. I just don't know. I am usually a very strong person but I don't feel that way now. I am just worried. Thanks for listening.

 

[BarryG]

JOSIEM02, it's OK to be scared, personally I'm scared every minute of every day. I am very sorry for all that your mother in law is going through and I know that you will be OK. I am not totally on my PEG tube yet but when I am I want my family to cook all kinds of yummy stuff with fabulous smells. Most of our taste is smell anyway and I want to remember the taste of food by using my nose. It is hard for me to know that no matter how good something looks or smells I won't be able to eat it and I know that it will be hard for you and her but you will be able to do what you have to do. You have to eat too. And as others have done you can buy a good blender and feed her whatever you are eating through her tube!

All the best

Barry

 

[hshoote]

I am new to this ALS stuff. my father has it. Anyway, this post made me wonder... when my father can no longer eat and can only use the feeding tube, will he be able to put food in his mouth to just taste it then have us take it out? I know, seems kind of weird but I had a friend that was dying of cancer and she couldn't eat any more but she would taste the food then spit it out.

 

[BarryG]

hshoote, that's my plan! Just like wine tasting, taste and spit 8)8)

 

[indigosd]

Oh BarryG you always make me smile! Web and I have discussed this and he also wants to have a taste in his mouth. I think that for us it will be taste a teeny amount and then I will suction :] We all have moments of FEAR but remember this, Fear is only False Evidence Appearing Real! Josiemo2, so sorry that you are having this journey but how lucky for your MIL to have you! hshoote, there are great threads here all about peg's [feeding tubes] and you can really educate yourself. I think joelc even has a video. The general consensus is to get the Peg before you need it!

 

[JOSIEM02]

Thanks for taking the time to reply. It's just sometimes I just get scared. There is a chance my MIL will be coming home on Monday. Her insurance said enough is enough. I know she will be glad to be home but I personally don't think she's physcially ready. She was to go to ALS clinic on the 19th and her and her daughter cancelled it for some reason. I asked them not to since we knew her time in the nursing home was closing in and they could guide us as for help during the day while my husband and I work. Now she doesn't go back until the middle of September. I think that was a hugh mistake. Again, thank you for your advise and time.
Josie

 

[BarryG]

JOSIEM02, I think that if your mother in law is coming to live with you and your husband then you and your husband should be the ones making the decisions for her. For her daughter to cancel clinic appointments is not something that should be happening without your say so. I know that family dynamics can be challenging at the best of times and are even more difficult when the care of a member is concerned. You are right that clinic visits are very important, I have never avoided, cancelled or even postponed mine even in the dead of winter with 6 hours of snowy roads. All I can say is, stay strong and push for what you think is right.

Barry

 

[Tfisher]

Josiem02,
I know how you feel about not wanting to eat or drink in front of your mother-in-law, I just moved my parents in with me and I need to cook for my dad and as Barry says we do have to eat. I really hate eating in front of my mom but she handles it very well, sometimes she leaves the room or maybe just picks up her ipod (she's addicted) and does her thing. There are some things that I don't make at home because I know they are her absolute favorites so I eat them elsewhere. My mom does try to put some food in for flavor but has such a hard time moving anything around in her mouth that it's sometimes easier to not mess with it.

 

[tdamess]

omg i never even thought of this -heart is breaking more everyday cause of this and other diease's like it wish i were a scientist and bio-chemist