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faithandlove

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According to my Neurologist, I am progressing fast. I was officially diagnosed with a second opinion on June 8th. I turn 65 in November, have a wonderful husband, two adult children four grandchildren, and excellent friends. I have had a good life; however, I do not want to continue living this way. I am not depressed or suicidal, I just look forward to the end of this nightmare.

I was thinking about a Peg in case I can no longer swallow medication. I would like to have morphine and have a peaceful death, but can't they give that intravenous? I do not want it for feeding. I'm getting a trilogy because they said it would help me not sleep so much. I cannot stay awake during the day and I feel I am sleeping the rest of my life away. I agreed to this for this reason only.

I've got all my documents in order and my family understands how I feel. I, also, have long-term care insurance. When the time comes, I will use it. I love life, but my old life - not this life. . All I feel is I'm a burden, but I know my loving family does not feel this way. No matter.. Also, my husband is disabled. He has had four back surgeries, and he has drop foot in his left leg. He is my main caregiver, and he is in denial of how bad I will get. Probably because I have always been such a strong woman.

Does anyone else feel this way? If so, what are you doing to shorten the time span? Is the Peg a stupid idea on my part if I want this over sooner than later?
 
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affected

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I would suggest you immediately register with palliative care.
Discuss fully with them your wishes, how you want things to be.

They can help you stay very comfortable and will not try to prolong life.

They can talk to you about ways to administer morphine besides a peg and work with you to achieve what you want.
 

lgelb

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If you do not want to use a PEG for feeding/hydration, there is no reason to get it. Yes, morphine can be injected.

I would just try to make sure your family is in sync (knowing your wishes is not the same as committed to honoring them) before summoning palliative care so a single message is being communicated by all, without conflict.

I would be equally clear about your wishes to any agency you contact. Some are more on that page than others. Of course, you do not need an agency to have a peaceful death if someone in your family or circle of friends is willing to step up when the time comes. If you are worried that your husband will not be that person, perhaps there is someone else.

Best,
Laurie
 

affected

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I think you also need to get your legal documents in place - living will, power of attorney both financial and medical.

To do this the best way for yourself and everyone you need your husband involved and understanding everything you want.

I would want a palliative care team (you may have to shop for one that really fits your needs well), because they can fully support your family to help you meet your wishes, and to help them understand what palliative care really means. It doesn't mean you have to go into a hospice facility if you don't want, but that option is there if that is what you want.

Some meds can be given by patches, and some important ones are given as drops under the tongue.
 

tripete

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What you are feeling is not uncommon. I do not want to drag this out any longer than necessary either. I will not get a PEG or Trach and use my bipap only to sleep. I do not use it during the day because I do not want things to keep going this way. And I will also arrange when tit is time for help with morphine.

At the same time I fight everyday to be the person that I am. I try to treat those around me with love by putting their needs in front of mine. This may sound contradictory with saying I want this to end soon, and maybe it is. But my physically body having to have even the most basic needs done by someone else is not living.

So I try and serve rather than being served with whatever I have left. As every decision we make on what we physically do will help lead to more of a decline I try and do things that will help others with what strength I have. For me this looks like simple things. I clean the kitchen (well I try), I try and get out and pump gas for my wife etc..

Our lives have a certain number of days to them. We do not know the number only that it is approaching quickly. Use them to the best of your ability.
 

lgelb

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Tillie, F&L did mention that all documents are in order, which of course is wise for a PALS at any stage.
 

faithandlove

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Yes, saw an attorney and I did specify my wishes very clearly to him. I asked if we have the necessary documents completed now and he said we are all set. My daughter is our Power of Attorney medically because she is stronger in that category (to make sure my wishes are meant), and my son is the Power of Attorney financially.

I always say thank you for any help I receive from friends and family. There are lots of kisses and hugs. Family has always been everything to my husband and myself.

I try to help out, but, unfortunately, I am at a state in progression of ALS in which I cannot do much. When I try, I come close to falling. My legs are getting weaker each day. I do use a walker, but only to go short distances. I then have to sit down, catch my breath and try to proceed and get my strength back. I can now barely get off the walker when I sit on it, so I need to get a motorized wheelchair soon (I have a small manual one now that I use for outside). It has been ordered, and I'm waiting for it. My husband wants to go to Sacramento to get a handicap van. I will not dispute this since I don't know how long I will be around and I like to get out -especially to see movies and eat out.

I am going to try to spend one more Christmas with my family, then I want to go. This year has been so difficult. My father died, two of my dogs died, and I got diagnosed with ALS. At least my children and grandchildren are doing well, and I am grateful for that.

Thanks for the helpful suggestions.

Hugs,
Deb
 

azgirl

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Deb,
When I was first diagnosed i Felt exactly like you do now. I looked up and thought of all the ways to shorten this journey. But then I found ways to find simple joy in each new day and I'm glad I did not act on ending sooner And anti-depressant also helped lift the darkest clouds. Maybe this will happen for you, so try not to think much ahead. Living in the moment is the best way for us pals to get through another day.
-Kay
 

faithandlove

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You're right Kay. I am on a low dosage anti-depressant, and I am still seeing my Psychiatrist about every three months now. Maybe when I get my motorized wheelchair and handicap van I will feel differently. It's hard when we go out to watch my husband struggle to get the manual wheelchair down the ramp with me in it, and then get me into the truck. Then the cycle happens again when we arrive at our destination. When my daughter or son is around, they get me around. My daughter was coming over often, but she goes camping a lot during the summer. My son lives further away, and he comes over as often as he can.

I, also, have to have help getting in and out of our bed. I have a hospital bed, but they sent the wrong one, and we are waiting for it to be replaced. My husband wants me to have a full motorized hospital bed. Once I get it, I'll be sleeping downstairs and he will be sleeping upstairs (we have a stair lift).

It is difficult to see all the new equipment in my formal living room, and my furniture moved to the side. My family will have to make more changes so I will be able to get around with the motorized wheelchair.

It has been overwhelming,

Deb
 

azgirl

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It is overwhelming, especially in the beginning. I know what you mean about seeing the equipment replace all the things you love about your home, so hard.. It is true that once you get a motorized wheelchair you will feel more in independent. And the van helps a lot so that you can get out.
 

Atsugi

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We turned our living room into a hospital room with a fireplace and TV. The family hung out there with my PALS, who was in the hospital bed. The equipment was nearby, but placed out of sight of my wife (behind her) so her view was a nice living room. I moved a little bed next to her so I could sleep next to her.
 

affected

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Yes, saw an attorney and I did specify my wishes very clearly to him. I asked if we have the necessary documents completed now and he said we are all set. My daughter is our Power of Attorney medically because she is stronger in that category (to make sure my wishes are meant), and my son is the Power of Attorney financially.
Deb
Sorry I got a thought in my head and did not go back to the original post to check you had legals in place.
I think you have done well to make sure that is all covered, choosing the right people to advocate and make decisions for you for the right areas of need. If you need them to do that at any point.

A great thing about having a plan is that you can always change the plan. But having no plan, not knowing your options is an awful feeling. So make all the plans you need!
 

Scotiaspirit

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Deb, I understand how you are feeling, I been doing a lot of soul searching in how far along I want to go. A PEG is in my near future as I am starting to choke with more frequency on my pills and foods. My doc changed a couple of my medications to liquid forms. My wife keeps saying she hopes I can live a few more years with this disease, however, I don't feel like my body feels like my own anymore, if that makes sense to anyone. ALS is a terrible nightmare, continously chipping away at body and soul. At least in Canada now, there is legislation being drafted that patients with terminal diseases can request euthanasia with a fifteen day waiting period, there are stipulations and I am not sure how far advanced the disease has to be before a person can request that avenue. As quality of life keeps eroding, it is something that I do think about. I hate the thoughts of being a burden to my family, and try to find something in each day to be a blessing and have gratitude for. I don't allow myself to look too far into the future, but try to keep some focus in the moment. It really is an incredible challenge living with this disease.
 

faithandlove

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I'm glad I posted this thread. CALS who lost their loved ones to ALS - bless you for using your valuable time to help others who have ALS. You share your knowledge and experiences and it is invaluable to us PALS. THANK YOU!

PALS - We all have different situations. Some of us are progressing slow and others, like myself, fast. Some of us are young and have small children, and some of us have grown children or no children at all. If I was younger with children, I would probably be making different decisions. I certainly would be a fighter if there was a possibility of a cure.

The Nevada legislature will be having the Right to Die law coming before them this year. It has already passed in California, and I hope it passes here.

Deb
 

affected

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Chris and I discussed end of life stuff early after diagnosis.
That was a good thing because he also had FTD and soon lost the ability to discuss these things in anything like the same way.

He had a beautiful ending to his life, at home, with good palliative meds, just me caring for him - candles and music and peace and calm.

He did not choose the timing, he progressed rapidly and he went into a stage of actively dying. We had already agreed no hospital - he had suffered an aspiration pneumonia a month previously and when we got home from hospital he said no more as he did not want to die in a hospital.

The knowledge of how we wanted things to be allowed me to feel calm and to accept that he was in a living hell and if we took efforts to pull him through he was only going to become worse. He was emaciated, could not speak or swallow, no use of his arms, just tiny movement in one finger and could no longer stand. His breathing was very difficult but he never accepted a bipap.

I feel that he went out on his own terms. It was ALS that took him, but I know that he let go when he couldn't take any more. I supported that then, and I have never regretted that I didn't try to get him treated, in hospital or anything.

I believe the disease belongs to both the PALS and CALS, but at the same time it really belongs to the PALS. As a CALS I feel that our job is to support our PALS in what they want. It has brought me a lot of peace, and is why I support PALS and CALS now.

We can't cure this monster yet, but we can make choices that are right for each individual. ALS is so different in each person - there are no blanket right or wrong choices.
 
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