Status
Not open for further replies.

DeansWife

Distinguished member
Joined
Oct 18, 2011
Messages
197
Diagnosis
08/2011
Country
US
State
AL
City
Fairhope
Dean had his Peg tube procedure yesterday. All went well and he's doing fine. I'm the basket case, the crazy one, the overwhelmed one.

Home health care showed up around 11am today. Two gals arrived at our door with their arms full of stuff and went back to the car for more. I asked what all of it was and was told formula, syringes and some other misc. stuff. I'm looking at 6 cases of formula and said, dang, I don't know where I'll store it. One of them answered - in the pantry. Oh sure, maybe she has a big one, we don't. Onward, the RN says - I have a lot of paperwork for you to sign. OK, no problem. Then she asks if Dean has a advanced directive/living will. Yes. OK, she needs a copy. Off I go to the other room to make her a copy all the while she is still asking me questions. I'm thinking, lets do one thing at a time! Sorry but my brain is not that of a 30 year old, it runs slower! I get the copies made and she is rattling off the paperwork so fast I can't keep up. Sign here, initial there, sign here, on and on. She says - I know it's a lot but you can look all this over at your leisure - what the hell is that! So, paperwork is signed, I now own a book to read at my leasure and we're moving on to the feeding tube. The helper meanwhile has been removing the bandage from Dean's stomach. So I'm told, use this and this (peroxide) and wipe around the tube. Don't worry, she says, you can't hurt him. Really? That's done and then she talks about sucking out the contents of his stomach and if it so much no feeding should be done and oh yes, you have to put what was sucked out back in. Then on to the formula, it's gravity feed so pour it in the syringe and let it flow. OK, so I pour and no problem, I pour more and she says don't fill the syringe because it may burp and it would go everywhere or if Dean coughs same thing. Feeding takes very little time for a can, good thing I think. Have to do it 5 times a day unless he eats during the day. I wash the syringe and plunger. The RN says to me, there you go, you've got it. If you have any questions just give us a call. Out the door they go! It was about 25 minutes later. So, I didn't expect them to spend the day but dang, they could have slowed down and let it sink into my pea brain so I would know if I had questions. I watched them drive away and it was like the most helpless feeling I've ever had. I stood on our front porch and cried. I know that ya'll have been through this but did you feel so helpless? I'm not afraid to feed or help Dean feed himself. That wasn't the problem. I believe it was like finally realizing that not only Dean's life was changing but mine was too. How do you keep yourself from becoming depressed? Do any of you take anything? I am suddenly so completely overwhelmed by it all that I don't know what to do. My friends all say I'm such a strong person and I think I always have been. Will it come back? I don't feel that way now. Maybe writing this out will help me, I pray it does because I don't like the way I'm feeling mentally and physically. I'm not young but not OLD either. I'm going to be 69 this year and have some medical issues myself that I've put on the back burner because of being consumed with taking care of Dean and making sure he keeps all his appointments etc. I know that I need to keep myself in good physical condition but when do you find the time?

Well, there you are, I've beared my soul. I pray tomorrow will be a brighter day and I'll wake up feeling like I can take on the world. Thanks for listening as I know ya'll have your share of problems/issues also.
 
This is an awesome post. You're doing amazing job and even with all of the stress and craziness, you're able to lucidly explain the cause of your distress. Sounds like you're right on the ball to me. It wasn't fair of the home health care team to treat you as if you have their level of experience at this stuff. Our HHC gave us an 800 number and told us to call any time 24/7. I haven't used it yet, but it makes me feel a little better to know that it's there. Maybe that info is included in the 'leisure time' book?

Meanwhile, I'm definitely taking a little Rx to reduce my stress levels. We are strong and can do the millions of things that need to be done and we can learn all of the new stuff we never even knew existed, yet alone wanted to learned, but that doesn't mean we aren't overwhelmed by it. I can only speak for me, but I'm overwhelmed every day. Mostly just pretending not to be gets me through the day, but sometimes (even with the antidepressant), I just have an unexpected little cry.

I'm so sorry that you're in this boat, but I'm impressed with how you're handling it. Hang it there and know we're all struggling and overwhelmed sometimes - or even most of the time :)
 
Oh, DeansWife! That was a horrible way for those "professionals" to treat you! I am so sorry you had to go through such a hurried and insensitive explanation of how to help your husband with feedings. I know you feel overwhelmed right now, but you know the forum members will help you along the way.

You can control the spilling of formula with a clamp. If the tube did not come with one, you can get a little clamp with rubber tips at the big box home improvement store in the electrical department.

As for peroxide, that's a little harsh. Something like an OTC wound care wash is better, we were told.

As for sucking out stomach contents, that only happened for my husband when he had issues with keeping the formula "down" or he was nauseated.

It seems there is no regular protocol for the handling of these things, as it varies from one health "pro" to another.

Please be sure to ask on the forum, if you have any problems. We've "been there and done that" in most instances.

Wishing y'all luck!
 
DeansWife, I responded to your post, but it went to moderation for some reason. Maybe it will show up soon.
 
Mine did, too. Sorry DeanWife
 
I am so so sorry for your husbands diagnosis and peg , and all that comes with it, the helplessness and despair. You did not need that visit to go as it did, obviously they are oblivious to the reality of the situation and were not very compassionate and caring at all. I hope and pray things will look brighter for you tomarrow. {{{BIG HUGS}}}....Rant all you want, it is good to get it out.
 
Dear Deans Wife, I just lost my dear mother April 14th to ALS. I look back on things now & even though I wanted so very hard not to have regrets, I do. This has been the hardest challenge I have ever been through. The only thing worse would have been sitting in the chair that my mother was in & watching from that side. I would like to share my experience to possibly help someone else and to maybe help me get through this stage as well.
I toyed with the idea of going on an antidepressant. I never did due to never having the time for myself. Care taking and working consumed my days. I look back now & wished I would have tried an antidepressant to help with my depression. I think it might have made the days much more enjoyable. Caretaking is consuming, and when you don't get the sleep you require, that just makes the day that much harder. I wish I would have had more help so that I could have had more quality- "enjoyable" time with mom and not always busy doing things that needed to be done. It was overwhelming for me as well. There were ALS support groups, but again, it was too hard to get mom ready & go anywhere for the most part after I had been up several times during the night to turn her. There are no easy answers, but do TRY to take care of yourself as best you can so that you can continue to care for Dean in the best way possible. Make an appointment with your doctor and consider an antidepressant. I wish I would have. Caretakers need support both emotional and respite to get through this as well. I will keep you and all other caretakers and ALS patients in my prayers for the rest of my days.
 
Dean had his Peg tube procedure yesterday. All went well and he's doing fine. I'm the basket case, the crazy one, the overwhelmed one.

Home health care showed up around 11am today. Two gals arrived at our door with their arms full of stuff and went back to the car for more. I asked what all of it was and was told formula, syringes and some other misc. stuff. I'm looking at 6 cases of formula and said, dang, I don't know where I'll store it. One of them answered - in the pantry. Oh sure, maybe she has a big one, we don't. Onward, the RN says - I have a lot of paperwork for you to sign. OK, no problem. Then she asks if Dean has a advanced directive/living will. Yes. OK, she needs a copy. Off I go to the other room to make her a copy all the while she is still asking me questions. I'm thinking, lets do one thing at a time! Sorry but my brain is not that of a 30 year old, it runs slower! I get the copies made and she is rattling off the paperwork so fast I can't keep up. Sign here, initial there, sign here, on and on. She says - I know it's a lot but you can look all this over at your leisure - what the hell is that! So, paperwork is signed, I now own a book to read at my leasure and we're moving on to the feeding tube. The helper meanwhile has been removing the bandage from Dean's stomach. So I'm told, use this and this (peroxide) and wipe around the tube. Don't worry, she says, you can't hurt him. Really? That's done and then she talks about sucking out the contents of his stomach and if it so much no feeding should be done and oh yes, you have to put what was sucked out back in. Then on to the formula, it's gravity feed so pour it in the syringe and let it flow. OK, so I pour and no problem, I pour more and she says don't fill the syringe because it may burp and it would go everywhere or if Dean coughs same thing. Feeding takes very little time for a can, good thing I think. Have to do it 5 times a day unless he eats during the day. I wash the syringe and plunger. The RN says to me, there you go, you've got it. If you have any questions just give us a call. Out the door they go! It was about 25 minutes later. So, I didn't expect them to spend the day but dang, they could have slowed down and let it sink into my pea brain so I would know if I had questions. I watched them drive away and it was like the most helpless feeling I've ever had. I stood on our front porch and cried. I know that ya'll have been through this but did you feel so helpless? I'm not afraid to feed or help Dean feed himself. That wasn't the problem. I believe it was like finally realizing that not only Dean's life was changing but mine was too. How do you keep yourself from becoming depressed? Do any of you take anything? I am suddenly so completely overwhelmed by it all that I don't know what to do. My friends all say I'm such a strong person and I think I always have been. Will it come back? I don't feel that way now. Maybe writing this out will help me, I pray it does because I don't like the way I'm feeling mentally and physically. I'm not young but not OLD either. I'm going to be 69 this year and have some medical issues myself that I've put on the back burner because of being consumed with taking care of Dean and making sure he keeps all his appointments etc. I know that I need to keep myself in good physical condition but when do you find the time?

Well, there you are, I've beared my soul. I pray tomorrow will be a brighter day and I'll wake up feeling like I can take on the world. Thanks for listening as I know ya'll have your share of problems/issues also.



I'm sorry about what yoou are going through, sent you a PM.
 
I'm so sorry about the treatment you received at the hands of these "professionals." Yes, the paperwork can be daunting whenever a new agency or support service is added. We've spent at least an hour, sometimes longer, doing paperwork alone whenever a new service has been called in. It's so disheartening to hear that you were rushed through this process. Where on earth has the "compassion" gone with so many of the professional caregivers?

Please take time to take care of yourself too! My CALS is struggling with this issue as well. Many do find antidepressants helpful. My daughters are taking them with good results. Please don't be afraid to try them. If one doesn't work for you, perhaps another one will, so do be open and honest with your physician and don't hesitate to contact her/him in between visits if necessary.

Rose has posted some excellent links and information on the care of Pegs. (photo's included!)

I'm praying that you'll have a better day today.
 
Dear Dean's Wife,

Of course you are overwhelmed! I have no idea how any CALS on the planet wouldn't be. I have been exceptionally overwhelmed lately and I haven't even moved to my mom's house yet! Just overwhelmed with tying up all the loose ends and getting all the health care needs taken care of before I lose health insurance with my job, and packing and preparing my home for a caretaker. And I haven't even STARTED on the ALS daily caregiving road yet!

An antidepressant will "take the edge off," if you are feeling depressed. It will help to give you the energy you need to do the things you need to do to stay in charge of your emotional self. Counseling or support groups help also and the combination of medication and counseling is a one-two punch that usually does wonders at keeping depression at bay. But you MUST make time for yourself, even though it's really hard. You asked "how do you find the time"? You don't. You MAKE the TIME. If writing your rant helped, try writing every day. If exercise helps, by all means find a way to do it. We will be unable to care for our PALS if we don't take care of ourselves, and that includes your own medical needs. Everyone gives me that old "you are so strong" line, too, but I had a big meltdown last night, did some major crying, took a long hot bath, (considered taking one of the cat's valium, but didn't), and got some good sleep. Today, things feel easier. I hope that today things are easier for you too.

Bless you. Today's a new day. I hope it's a beautiful one for you.
 
:) Today was a better day. At least for me. Dean is not feeling so well. I wonder how long the pain from having the Peg done lasts? He says it's about a 4/5 on a scale of 10. He doesn't want to eat or be fed through the tube! What to do. He has had two cans out of the daily 5. He has ate some food by mouth but not a lot. He has been sleeping off and on almost all day. Guess I'll call the doctor tomorrow if he isn't acting any better.

Thanks for listening/reading my rant. It did help along with a good nights sleep!
 
You are so awesome and doing such a good job. Keep your eye on him tonight!
 
I am glad your day is a bit better. Yes I would call the doc too. You are doing a great job taking such loving care of him, You are a hero to me. My Prayers are with you both. {HUG}
 
Deans wife, before you know it, you will be doing it with your eyes half closed..I promise:)
 
HI

If he's not feeling better--perhaps they can prescribe something light for the pain? Tramadol or something similar (non-narcotic and a bit stronger than tylenol or advil)

For you--certainly get some antidepressants if you need them! There is absolutely no shame in that at all.

When they come again--simply tell them to slow down so you can understand what they are saying. Ask if you can make a tape recording so you can listen later if you need to.

I'm a bit slow on verbal explanations--I need to learn things slowly. The older I get, the more that is the case.

you might ask if they have the IV type of set-up for tube feedings if they are available. Sometimes they are used in nursing homes to make tube feeding a little easier. Kind of looks like an IV setup--only the formula is in the "IV Bag" instead of real IV.

Of course you're feeling overwhelmed. I'd be surprised if you weren't. Please try to find the time to take care of your own health issues as well. You need to take care of YOU to take care of HIM.

Hugs
 
Status
Not open for further replies.
Back
Top