Clinic Today 6-3-15
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notBrad
Senior member
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- Feb 26, 2015
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- 632
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- PALS
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- 04/2015
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- OR
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Congrats on the DPS. As far as the PEG, FWIW in my case I'll probably opt for it as soon as it makes sense. My theory is that I'd want to save my eating ability for "pleasure" eating as long as possible and if a PEG will reduce the "wear and tear" of just cramming in calories/hydration then why not.
affected
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Pete, I'm so glad you qualify, I do believe that DPS could give you some really good quality time.
Lots of thoughts have already been given on the peg, but truly your wife will find it so easy to use and she will know you have had plenty of fluids and the nutrition you need. You can enjoy to eat what you can with her, instead of her constantly worrying about getting food into you and choking etc etc
It really is all about quality. Assistance breathing and fluids and calories are all going to improve quality. Will they lengthen your life? Who knows, and to me the point is that if they improve quality then it's fine if they give you greater quantity too but quality is the key
Lots of thoughts have already been given on the peg, but truly your wife will find it so easy to use and she will know you have had plenty of fluids and the nutrition you need. You can enjoy to eat what you can with her, instead of her constantly worrying about getting food into you and choking etc etc
It really is all about quality. Assistance breathing and fluids and calories are all going to improve quality. Will they lengthen your life? Who knows, and to me the point is that if they improve quality then it's fine if they give you greater quantity too but quality is the key
gooseberry
Extremely helpful member
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- 5/2014
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Great news Pete that you will be able to get dps. Steve does have a peg and he uses it for now when he is tired so he doesn't have to eat. We use it so it works for us. Initally he didn't want one but then he decided to get one to use it for meds. Now he is very glad to have it. It gives him freedom and conserves energy.
starente15
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- Lost a loved one
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- 10/2017
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Do you have a little time to make the decision Pete? I can understand how it's to much but maybe over a few days it will be easier to determine which path to take?
cheerleader
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- Jul 6, 2013
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- Lost a loved one
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- 08/2012
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Oh, Pete, your plate is so full and you are worrying about your wife! Will she come on the forum and talk to other wives dealing with this? It really helps to talk to others going through this journey. Is she talking to the social worker or the psychologist at the clinic? Truly sounds like she needs extra help so she can be more help in supporting your emotional well being. I am so sorry.
4tloml
Senior member
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- Sep 15, 2014
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- 578
- Reason
- CALS
- Diagnosis
- 04/2013
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- US
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- CA
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- Suburban
@Gooseberry, that's a good measure for every treatment or device we seek: Does it give more freedom? Does it conserve energy?
@Tripete, sounds like a rough day--we can be glad to have an option, even though the decision-making process without futurevision can really suck. Thoughts and prayers are with you and your wife as you go through that process together.
Thankfully, we all have this wisdom and experience shared here by people who have been in the same spot to help us along.
@Neil--so glad to hear you're now happy you got the PEG and it's working for you!
@Tripete, sounds like a rough day--we can be glad to have an option, even though the decision-making process without futurevision can really suck. Thoughts and prayers are with you and your wife as you go through that process together.
Thankfully, we all have this wisdom and experience shared here by people who have been in the same spot to help us along.
@Neil--so glad to hear you're now happy you got the PEG and it's working for you!
gooseberry
Extremely helpful member
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- 5/2014
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Pete I started seeing a counselor with my son. It morphed into seperate sessions for us both which is as it should be. It has helped immensely. The hardest hurdle is seeing a loved one go through a disease and knowing you can't fix it. The cals mindset, in a sense, needs to change. You need to figure out how to let go of control and live more in the moment. Trust me, as a control freak who plans this wasn't easy. But it has made our lives much better and happier. I don't agree with all of Steve's decisions but it is his disease and they are his decisions. Only he knows how he feels and what will make him more comfortable.
As a cals it is my job to support that. So , I would encourage your wife to get some counselling. It will help her.
As a cals it is my job to support that. So , I would encourage your wife to get some counselling. It will help her.
affected
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Pete this is so extra hard on you, and sadly on your wife as well. We all need to stand up and put our big girl/boy panties on and deal with this. We also all need compassion and understanding to survive intact.
If your wife would like to talk to anyone I am available so pm me. If she could stand an aussie accent I can talk by phone or skype, or can just talk text with her.
If she seemed even for a moment to be willing to talk to anyone in your area try and get it happening before she changes her mind. Denial is such a powerful creature!
Does she attend doctor visits with you? Do they talk directly to her as well when offering you options?
How long will you have to decide on the DPS and PEG?
hugs mate
If your wife would like to talk to anyone I am available so pm me. If she could stand an aussie accent I can talk by phone or skype, or can just talk text with her.
If she seemed even for a moment to be willing to talk to anyone in your area try and get it happening before she changes her mind. Denial is such a powerful creature!
Does she attend doctor visits with you? Do they talk directly to her as well when offering you options?
How long will you have to decide on the DPS and PEG?
hugs mate
tripete
Very helpful member
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- Dec 5, 2014
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- Reason
- PALS
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- 12/2014
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- US
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- PA
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- Lancaster
"Does she attend doctor visits with you? Do they talk directly to her as well when offering you options?" No she will not go, she says it is to hard because they don't want to help me (her code word for cure me) but just watch me die and give "dumb suggestions".
"How long will you have to decide on the DPS and PEG?" I have an appointment to speak with the surgeon on June 26th. I may try to put off any surgery until after the first two weeks of September as we will be going on a Cruise then. I will need to get my doctors opinion on this. I am insisting she goes to the surgeon with me, hopefully that works out.
Thank you for your kind offer but she will not talk to anyone even her mom who she is close to.
"How long will you have to decide on the DPS and PEG?" I have an appointment to speak with the surgeon on June 26th. I may try to put off any surgery until after the first two weeks of September as we will be going on a Cruise then. I will need to get my doctors opinion on this. I am insisting she goes to the surgeon with me, hopefully that works out.
Thank you for your kind offer but she will not talk to anyone even her mom who she is close to.
tripete
Very helpful member
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- 12/2014
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- Lancaster
I wanted to say that I share these struggles and difficulties in hopes that anyone else having the same issues might be encouraged by some of the answers. I often feel despair over this disease. I love my wife with all my heart and know that what makes it so hard for her is that she cant picture being without me. I can not picture being without her either but want to do everything I can to care for her. She is the best thing that has ever happened to a looser like me. I hope she can find peace in some way after me.
- Joined
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- 01/2014
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Pete, be careful about putting the DPS surgery off too long; depending on your progression you risk missing your window.
I'm sorry that your wife is having such a hard time accepting the realities of this disease. It must make things so much harder for you. I worry that she won't be prepared for the rest of this journey. I feel so badly when I see comments about doctors not offering help during clinic appointments. We always get good information and helpful advice. I can see, though, how unhelpful that would seem if I were expecting them to cure my darling.
Finally--loser? No, I think not. I offer as evidence that the wife you adore loves you, and so do we.
I'm sorry that your wife is having such a hard time accepting the realities of this disease. It must make things so much harder for you. I worry that she won't be prepared for the rest of this journey. I feel so badly when I see comments about doctors not offering help during clinic appointments. We always get good information and helpful advice. I can see, though, how unhelpful that would seem if I were expecting them to cure my darling.
Finally--loser? No, I think not. I offer as evidence that the wife you adore loves you, and so do we.
gooseberry
Extremely helpful member
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- Jul 2, 2014
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- Lost a loved one
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- 5/2014
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- Tampa
Unfortunately Pete, some people haven't dealt with serious illness or death of a loved one. This maybe the case for your wife. There are a set of skills you learn along the way that help you do what is necessary and survive it. A close friend of hers or anyone who has gone thru this process may be able to help her. You are going to need a caregiver to help you. You may love each other but if she can't cope with that role, you could look at finding someone who can fulfill that roll so you can have time together without her providing care And that's okay!
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