new member - questions

[SamFranco]

My mother was diagnosed with Progressive Bulbar Palsy in January. Symptons started about a year and a half ago. She will be 88 next week and has no other systems of ALS. We are lucky and thankful for that. She lives alone and still drives to the grocery, church and hair appointments.

She can no longer talk, has difficulty swallowing and has lost 12 lbs since January. She was diagnosed at UAB-Kirklin Clinic. We had our first visit with a DMA doctor in Jackson Ms in March. He ordered blood test and a swallow test. Told her to start taking Ensure to quit losing weight and talked to her about maybe needing a feeding tube. The blood test resulted in an appointment with a pulmonary doctor. The pulmonary doctor order a chest x-ray which was fine, but because of the blood test ordered a complete pulmonary test and hinted strongly that a trach may be needed if Mom agreed. My mom couldn't swallow a pill on the swallow test because her head was against something and she couldn't tilt her head backwards.

The questions are what kind of quality of life to expect with a trach and feeding tube? Will she still be able to eat some food or ice cream with a trach? One of her joys in life is going out to eat. Will she need 24/7 in home help once she gets the trach and feeding tube?

Obviously she has led a long life. I don't think she has been overnight in a hospital in the last fifty years. She is a former RN and definately doesn't want to go to a nursing home or be put on any type of life support.

Are there any dangers to putting off the feeding tube? She doesn't want a breathing tube if they have to do surgery because she is afraid that may not be able to remove it and she would be stuck on a breathing and feeding tube.

I have pledged to keep her as comfortable as possible, not to put her in a nursing home, not to take drastic measures to prolong her life, and to keep her off life support if legally possible. She is at peace. This is going to pit me against family members, but I think it is the least I can do for her.

 

[Al]

hope you don't mind that I move this up here I think you'll get more answers here.

AL

 

[Toto's Dorothy]

Sam,

You did not mention that your mother has medical directives in place. You need to get these papers completed ASAP. This way the whole family will know in advance what your mothers wishes are. This keeps you from any backlash.

Welcome to the family nobody wants to be a part of. As you have already seen, we are very supportive and informative. Take advantage of the knowledge here. Good luck,

 

[notgivnup]

Sam, so sorry about your mom's diagnosis. Welcome to the best family in the world. Sorry you need to be here but you will find loving and kind people who will support you through this new journey. As Aly said have your Mom sign all her Advance Directives that way all will know what She wants. {{HUGS}}

 

[Toto's Dorothy]

Sam,

I'm sorry I didn't give you some answers. Is your mother being seen at an ALS Clinic? If not, she needs to be seen there because you have all the specialists under one roof. My doctor told us to be 2 steps ahead of the disease.

As for the feeding tube, it is better to have the PEG before it becomes an emergency. Your mother should be able to eat foods as long as her swallow study shows its okay.

There are many of pALS that have been living with the use of a trache. I do not have any breathing issues, but if and when the time comes, I probably will have it done. I still have young kids so I want to be here as long as possible. Getting a trache is a personal decision and many may not want to discuss it.

So again, I wish you and your mom good luck,

 

[Chase_Corin]

I can't really say much when it comes to a feeding tube because we are still waiting on one for dad.

However he has had a trache in the past and from what I remember he couldn't eat anything without putting the plug in his trache and even then it created some problems. The food had to be the consistancy of applesauce and he could only take very small amounts at a time. Things like ice cream that melt to a liquid might be tricky because with a trache you mostly need thickend liquids to keep the patient from asperateing. You should really talk to your doctor about this.

I wish you all the luck with your mother's condition. I do encourage you to ask questions of her doctor and remember no question is a stupid question. I work in a doctor's office and ask these things all the time. Because ALS is so uncommon in my area and not a lot of doctors have experiance with it asking questions gets them doing research and becoming educated themselves.

 

[caldona]

You need to get a medical power of Attorney

 

[DeansWife]

Sam, you have been given some great advice by the members above. Very important to get the Medical Directive and the Power of Attorney! Can't stress that enough. Will relieve some stress in the future. You said you had been to UAB, Kirkland Clinic - who did you see. Dean see doctor. We are pleased with him. He is one of the top specialists in ALS!

Dean just had his PEG tube procedure done this past Monday and at first it was really overwhelming but with the help of others here, we have it pretty much figured out and all is going well. We still have some pill issues. In retrospect, I should have questioned about the pills prior to him getting the Peg. Will be talking to his primary care doctor this week to see what can be done. Quality of life with a feeding tube should be OK. We are hoping to make a trip to Indiana next month and the tube won't be a issue. I hope the support you get here helps you and your mother.

 

[sues daughter]

My mom died in October. She refused to get a feeding tube. She tried to eat but food was stuck in her mouth. Her form of PBP caused some memory issues, so she could be clear with thoughts "in the moment" but would forget the conversation soon after.

So, we were clear that she didn't ever want a feeding tube. She was never able to remember why she couldn't swallow. It was complicated. I can't answer about making a decision, but I can answer about what happened to her when she chose not to eat. Her normal weight was around 130 pounds. She weighed about 75 pounds when she died. Her weight loss dropped significantly in the last two months. Because she couldn't remember that she couldn't swallow, she just kept eating(very small amounts) but it wouldn't go down. I didn't really know it wasn't going down... Near the end, I began to realize that much came out of her mouth when she brushed her teeth. if you think about it, we use our tongue even to spit food out of our mouths and the tongue loses its function, too. My mom seemed to choose foods carefully for softness, and naturally did the best she could. It stayed in her mouth since it was a small quantity and came out with her toothbrush.

I was told by ALS clinic doctor and other folks on the team there that one does not suffer as they "starve" or work toward death with malnutrition. It's a very gradual process. I don't think my mom suffered. She was mobile till her fourth day from death. I think she just got weaker and her walking began to suffer. She just slept more off and on, but she was very aware of her surroundings when awake.

On a Thursday night, something happened. I was the only one with her and she just looked at me like she was panicked and she told me she couldn't breathe. I held her because I thought she was dying. The hospice nurse arrived and ordered a bed and oxygen as her vitals and chest sounds began to change. She went into a comatose stage. The oxygen does not prolong life but makes it all more comfortable. I know she was aware of things around her because she clapped when I put the phone to her ear and her best friend was on the phone. There were signs that her awareness came in and out but we never had another conversation after that episode.

My reflection on the time we endured from her hospital bed on Thursday night to her death on Sunday morning tells me we did as well as we could. We respected her decisions and got hospice in when we could. This is not easy because there is little to tell when the time is truly upon you that death is imminent.. My dad could have been more forceful but I think he was in denial. Hospice is critical but for us it was hard to get one doctor to take control of our case. Who was responsible near the end? Neuro? Family Dr? My mom had good meds and she was able to swallow those with a syringe to squirt in the back of her throat.

I don't know if this is helpful. I looked and looked for information when my mom was in decline. I was crazy wanting information last summer about what to expect. Professionals will tell you that it varies from person to person. I guess I just want to provide some info if it might be of use to you. I'm sure every person is different. I've read more about end of life and I think it's important to believe that everything you say can be heard by the person in the semi-comatose state. Play music and talk to your loved one. Swab their mouth to help with dryness. Then trust that you have done all you can in a very hard situation if you respect their wishes.

I wish you well on this difficult journey - clarity, comfort, peace, and patience...

 

[Gentleman Jim]

Sues;

Sometimes the only way out of bad situation, is through it.

 

[tammyg]

My dad had bulbar, wow rough. If you ask me it was one on the better strains of ALS. My dad drove til the day he passed. My dad had the PEG, It would be better to get it asap. He was afraid of the breathing tube also. They had to do the surgery real quick so they could get it out. It took 20 minutes, not much pain in the PEG area. We were ablt to crush his pills and mix with water to put them in the PEG, he was able top eat with the peg in minutes instead of trying to eat and choke for hours sometimes. If she waits to long for the PEG alot of times they won't do it. Someone on this sight said their PAL got the peg without the breathing tube though...Parents are so stubborn and the last thing they want to hear advice from is their kid AAHHHH. It is so hard ...