Rough couple of weeks

[swi71]

I haven't been saying much here of late--just visiting and reading.
Gerald did get to RIC. Orthotics gave us some braces to try to help the contractures. Since he can't talk, I can only hope that the braces aren't hurting. We won't know for a while if the bracing is helping.
Gerald had a real bad day last week--didn't seem to be able to swallow (but he has done fine by mouth since then). As some know, he doesn't have a PEG (his request before he lost speech). I contacted his doctor about a swallow study and the feasibility of a PEG at this point. I don't want to go against his wishes, but I don't know if I have the strength to watch him starve to death. He can not communicate with us in any way due to FTD, so I can't know what he is thinking. I am scared that putting in a PEG at this point will also be too difficult for him to go through. Unfortunately, all this means another trip to Chicago (1 1/2 hours at best and very tough on him) and I start back to work on Tuesday.
To top this off, my daughter (23 years old) has a nodule in her thyroid that may or may not be cancer. She has had some inconclusive tests, so her ENT referred her to a specialist. We see him Tuesday night. She is scared--she is supposed to start student teaching after 5 grueling years of school next week. She was so looking forward to being done by Christmas.
Our faith is strong, but we're getting a little shell-shocked here. Please keep us in your prayers.
Sharon

[BethU]

Sharon, I'm so sorry you and your husband and daughter are going through this terrible period. I will pray that your daughter is OK, and Gerald is able to continue getting nutrition.

I have no idea if this would work for Gerald, since you cannot communicate with him, but I have difficulty "initiating swallowing" ... sometimes I hold food or liquid in my mouth for what seems like many minutes, and can't get the swallow started. Then sometimes I do try to swallow and nothing happens, the muscles don't work. I have found that when this happens, if I turn my head to one side (like looking over my shoulder), it somehow "releases" the muscles in my throat, and I can then swallow successfully.

I don't know if you could gently help Gerald try this if his swallowing locks up again, or if it would work for anyone else. But I'm so glad his swallowing has recovered since that awful day.

Hoping for the very best for your daughter, and prayers for all of you,
BethU

[Shane the Pain]

Dear Sharon:

don't know if i'd go against his wishes about the PEG, very difficult since he can't communicate. take this from a guy who is struggling with his own mortality.

Shane

[califsand]

I'm so sorry to hear that you are going through this. Making decisions when he can't communicate is really hard. If he told you that he doesn't want the PEG tube, it will be hard to abide by his wishes but probably the right thing for him. There are medications that can help him be comfortable when he is at a point where he can no longer take nourishment, and at that point he will likely want to be able to let go.

Hang in there and stay strong, get support from whatever place and people you can.

[swi71]

Thanks for all the support and encouragement. I still don't know what to do. We fed him last night because the caregiver was gone and Gerald did better. Sometimes I think the caregiver tries to feed him too fast and the consistency is too thin, but the caregiver is really good with him otherwise. I try so hard not to be critical and have lost caregivers because they don't take even constructive criticism well.
BethU--thanks for the hint. Unfortunately, his head is locked in position (which is probably why he can still swallow--he's permanently in the tuck position they recommended for swallowing when he first started having trouble). We can and do move his chair position to try to help.
I'm having a biopsy this afternoon--some tests came back from my doctor iffy. When it rains it pours, I guess.
Thanks again.
Sharon

[awieleba]

Good luck Sharon with your biopsy! It does seem to pour when it rains, but......there is a rainbow after. Even if we cant see it or understand it..................

[PDaddy]

As a PAL who also is against the PEG [or vent], I would be very angry if my wife went against my understood wishes. I know what would happen to need nutrition and not get it, and I'll be ready at that time. Heaven awaits... I am still able to function pretty well, I'm still swallowing, working, driving and walking so I have lots of time to enjoy life. I hope I am not hurting anyone's feelings here, It's just my opinion.

[CindyM]

Hi Sharon- I hope your medical tests and those of your daughters come out OK. Be sure to let us know what is going on with you two!

I wonder if your Hubby knew he had FTD when he said no tube? I know that would be the tie-breaker for me! I think I'd take a tube if I knew I could have a few good years or even months due to it, but for me, the FTD would change everything. :(

[swi71]

Thanks everyone--
Cindy--
1) Yes, he did have the FTD and that is part of what makes it hard. However, when we did our wills in 1992 (long before ALS) that was also his desire. I guess the good news is he's still been doing OK. It was his protein drink that was causing the big problems so the caregiver has stopped that until we can find something to put it in (besides water with Thick-it) that might work better.
2) My biopsy went fine--results were negative for cancer even though there were some abnormalities not related to cancer. Dr said we'd just "keep an eye on things."
3) My daughter's news was a mixed blessing. Dr is fairly sure that it is probably thyroid cancer (he said 80% of this type of results usually are). He thinks she can safely wait until she is done student teaching in December. He'll check before she leaves for her out-of-state placement (she is a deaf-ed major and has to do a residential school placement in TN). Surgery is scheduled for the third week in December right now.
Thanks everyone, again, for your concern and thoughts (no offense taken from anything said--these are the type of things I really need to hear).
School has started and I will be real sporadic from now on. It takes all I have to keep up with my planning and grading, but it is good for me to have structure with all that is going on in our lives right now. I do like working with teens--they, too, are a mixed blessing.
Sharon

[CindyM]

We will be thinking of you, Sharon. :-D

[swi71]

I've been browsing some of the threads tonight--lots going on. Sorry I've been out of touch since I started this thread. I ended up having to have further tests because of the problems I was having, but everything came back negative.
Gerald continues to hold his own. Since my request about the PEG, he has really not had any increased problems with swallowing. I don't understand this disease--it sure has its ups and downs.
Beth will go back to the doctor in October. The thyroid lump has enlarged, but we think it may have been due to irritation. She has started her student teaching and is also stressed out with that.
Thoughts and prayers,
Sharon

[Al]

Keep us in the loop Sharon. We do care.

AL.

[Flowerpot]

hi Sharon

My Mum has already said she does not want a peg - it terrifies me that she will starve to death so I relly empathise with you - keep strong and remember the sun always shines with a rainbow.

kind regards
Flowerpot

[givenin]

Please understand and check with your Doctors your PALS will not starve to death. My husband refused the PEG as well and did loose lots of weight but I asked the Doctor to tell him what the full implications would be if he did refuse it and starving to death is not it. If your Pal can not swallow anymore then he/she will not be able to take any liquids which is worse than not getting any solids or they will asperate which could or will lead to pnemonia. There is also a point when it is to late to insert a PEG. We had one surgen who was very happy to do so and laughed that he needed to put his children through Univeristy (joke , bad taste on his part) but the Anistioligist was againts it because of his lung stats and was worried he would end up on a trac which my husband did not want.

It is very difficult to stand by and watch your PAL fade and abide by thier wishes exspecially if you don't agree with them and there were many that I did not but it is thier ultimate struggle and our lot to ease their discomfort as much as we can. It will never cease to surprise me what we can handle what is thrown at us and still carry on and I read so much of it here.

You are all Hearo's PALs and CALs

I wish you all comfort and ease

[Seren]

Hi Sharron

My first post,so be kind .

My brother had a peg yesterday(friday). He had refused for months and lost 51/2 stone (77lbs). He is so thin. He was a paliative care nurse and hated the thought of a PEG. Finally he gave in, knowing that if he didn't have one he would have no quality of life. He will be home from hospital Monday. Hopefully there will be no problems. My brother is still able to walk but his swollow and speech are almost gone and and use of arms/hands has gone.

Perhaps if there is a possibility of communicating he can help you decide. This is a hard decision, I'm glad I didn't have to choose.

Take care, thinking of you

[CindyM]

Hi Seren- sorry to hear about your brother. I hope his surgery heals guickly and I hope he finds a new quality of life with his peg! Cordially, Cindy

[swi71]

Seren--
Thanks for your input. Welcome. I know it's hard to say something here, but everyone is so compassionate and helpful. After dealing with ALS for 6 yrs, I needed a place like this with real information and real people who deal with ALS every day. Some in the medical profession just don't get it. They know a lot about the disease, but don't have to live with it every day.
I have had lots of input about the PEG from both sides (here and drs). I think that I'll stick with Gerald's decision right now--we'll see the dr in November. She probably won't be happy, but I'm afraid we are already past that point you spoke of. Since he can't talk and is contracted, the PEG will probably be a danger in many ways now.
Thanks to all for all your support.
Sharon

[cbrown7777]

Sharon,

I can tell you that as hard as it is to watch over time, you may find some small comfort knowing that you are helping your husband maintain some control over his life. Does that make sense? My mother was 'on the fence' as far as a peg was concerned, but she went forward with it at my father's request. It was a decision she felt she really didn't make for herself, and she regretted it, as did he. My prayers to you and your family.
Carrie

[swi71]

Just wanted you all to know I have not dropped off the face of the earth--just gone to the nevernever land of teaching math again.
Gerald (PALS) continues to hold his own. He has been crying a lot more, but we don't know why. How we take communication for granted.
Beth (daughter) heads to TN to finish her student teaching this week. She is scared and excited and wanting so to be done. She had the tests to be sure she could still wait for the thyroid surgery and everything came back OK to wait. Now she just needs to get safely to TN and get started. (She is driving).
We have decided to leave another dr in Chicago for a number of reasons. What we need now can mostly be supplied by his local GP. We were promised support and just got more rejection. I've had enough of that.
Love and prayers to all--I've been trying to browse through and catch up on some.
Sharon