Dealing with the subject of death - Page 2

Vickaleesky · 10-13-2009, 10:35 PM

Thank you for your concern, compassion, understanding, empathy and willingness to help me through this. This evening is better than the day was. Sis had a very bad night last night (therefore so did bro)...the worst one so far. Bro only got about an hour of sleep before the alarm went off so he wasn't able to make it to work. That worries him (as it does all of us) because like everybody else in the country his place of work is talking about more lay-offs and he's afraid by missing days he's going higher on the list of people to let go. I've asked Jan to please consider letting me sleep with her in their room when I come over, and letting Steve sleep in my room. I can totally understand her not wanting to sleep without her husband, being a newlywed and all, but I'm so afraid of him getting sick and passing it on to her. I welcome any suggestions.
God bless you all.

Marjorie R. Wilcox · 10-14-2009, 02:18 AM

I have read these posts and wonder if this sister in law is really getting good care. I know, that's a low blow and it's not meant to be a punch in the gut.

You've heard the dx ALS and seemingly have since waited for her death. What about the time in between that she still lives?

The bipap just helps the patient get recuperative sleep. A better night makes your days functional.

The feeding tube prevents aspiration and eliminates the chance of choking. There is minimal care and keeping of it. Wouldn't you like to learn more about it?

The trach is a biggy. My PALS has decided he probably wouldn't get one when and if he gets to that point.

Most people don't even know there is anything wrong with my PALS. They don't see the bipap or the aspiration pneumonia or the imbalance or weaknesses. He has them and struggles with them, but he is still coming and going with limitations and is living.

He is likely to die with this. In the meantime he is living. He tires easily but he works doing income tax returns and is the treasurer for the local Elks lodge. He doesn't strain
himself but works some everyday.

It just sounds like this sister in law was put to bed and the people around her are just awaiting her death.

I am not even sure the oxygen is a good idea for her if she has ALS. It could even be detrimental with the carbon dioxide balance.

I hope with all respect that you are in touch with specialists in ALS and that you have learned the expectations and supports that are followed to prolong quality of life.

Vickaleesky · 10-14-2009, 10:24 PM

Dearest Marjorie, excuse me but you have no idea what we've been through. My sister-in-law sees specialists at the University of Utah. She has been confined to a wheelchair for almost a year. She cannot feed herself, her right side has no function at all, she does not have the strength to push her wheelchair control or even blow her nose. And if you had read this whole dialog you would realize that my sister-in-law HAS HOSPICE care every day and has had it since January...of her own free will considering she didn't marry my brother until May. These are HER decisions that she made with a clear mind. Hospice made the decision to put her on oxygen. Not just one person at hospice but a TEAM of doctors. She gets visits from a hospice nurse twice a week, she has visits with social workers and may God forgive your ignorance!!!!

Vickaleesky · 10-14-2009, 10:32 PM

One other thing, dearest Marjorie, HOSPICE did come in today and advised all of us that my sister-in-law needs to start sleeping separately from my brother because they're afraid my brother is ready to have a nervous breakdown due to lack of sleep. AND, nobody put her to bed and forgot about her. The hospice aide gets her up every morning, showers her, shampoos her hair, I blow dry her hair EVERY DAY, I make sure she gets her breakfast and her coffee. I rub her poor swollen feet until the purple color leaves and then I put on her TED hose. She is in a wheelchair. Nobody has a choice in this. And thank you so much for making my night!!!!!!!!!!!!!!!!!!!!!!!!!

flyingaseagles · 10-14-2009, 11:59 PM

Vickaleesky, please don't leave us I know you were hurt by the comment, but I do understand what you are going through and I do know you are doing a wonderful job with your sister-in-law. Please remember this forum will help you and be a friend to you and something like this forum will understand before anyone that has never been associated with ALS. ALS will make people sad and depressed at times and no doubt it has a lot of reasons to. I am so sorry your were hurt. I hope you don't leave us.
I am glad they suggested for your brother to sleep in another room he needs that rest bad. Working under that much stress is so hard and you are not only trying to take care of your sister -in- law but your brother too. Your sister-in-law has made her own decisions and she don't want to change her feelings so just respect her wishes. There maybe more reasons than we know about and she just don't want to say. You are very remarkable doing all that you are. Hang in there and you will be thankful you did I was a caretaker at one time and I would do it again if I needed to. God Bless You and give you strength.

BarryG · 10-15-2009, 12:45 AM

I would like to say that this is a support forum for all of us who are affected by this horrible disease no matter whether we the carer or the caree. While we are all going through similar things none of us can fully know from a few posts exactly how or what we are each going through and how we are being looked after as a PALS or how we are looking after our PALS. So as a support forum we should be supporting each other.

Vickaleesky, we are here to help you and from what you have posted I can see that you are doing your best and then some to look after your sister in law and brother in what is a very difficult time.

Barry

Katie C · 10-15-2009, 08:04 PM

Oh vickaleesky... I've had your post on my mind all day trying to word my answer, but now I wish I'd just gone ahead and said something last night. I for one NEVER had the opinion that your and your family have ever done anything less than your very best for your sis-in-law. Each PALS and his/her family has to follow their own path.. make their own decisions.. only they can know what the right choices are for their particular journey. All we can do is offer our best opinions, but hopefully then step back and respect the choices each family makes.

Please don't leave the forum. There are a lot of people here to support you and hold your hand through what look to be some trying days to come. Hang in there! {{{{ }}}}

brooksea · 10-15-2009, 10:13 PM

Let us move on. You've done your best. We cannot judge each other. I thank you for serving your SIL as you do and helping your brother.

Vickaleesky · 10-16-2009, 10:49 AM

Forgive us our trespasses as we forgive those who trespass against us.

Thank you so much for your kind words and support. The last couple of days have been HORRIBLE. I really wanted my SIL to be the one to make the decision, but alas, that did not happen. And when the decision was made for her, let me telll you, a more wounded, sorrowful, painful cry I have NEVER before heard. Sis is an EXTREMELY strong, independent beautiful woman and having choices made for her is definitely not her cup of tea. We've had to keep her quite heavily sedated since she got the news. Today they bring in the hospital bed so it's going to be another heart-wrenching day. She is so totally against this. We've tried to convince her that this doesn't mean she'll NEVER sleep with her husband again, or that she's going to be totally confined to bed. The daily routine will continue to be the same as long as she can handle it, and she'll have the weekends to sleep with her husband. She's still every unhappy.

I'd like to share just a bit about her with you. She turned 51 in March and was married in May. This is her first marriage. She just had never found that right man that she wanted to spend her whole life with. Now she wants to know why it is that she has found her soul mate, the family she never had (we really are a very wonderful bunch :>), and sisters she's always wanted and she has to leave this life she's so desperately looked for her whole adult life. We all know she already had this disease when she started dating my bro, it just hadn't been diagnosed, but I've told her God knew she needed us and we needed her...so here we are. She has truly enhanced our lives and I wouldn't trade this time with her for all the riches in the world.

A few family memories we've been able to build in the short time we've shared:
When sis was forced to medically retire she moved in with my brother. He lived in a very small, one bedroom home which was very suitable for he and his dog but within a couple of months Jan was totally confined to a wheelchair and an electric chair wouldn't fit into that house so my brother bought them a bigger home. It, like most homes these days, had stairs going up to the front door and the back door so he built a big deck with a ramp so sis could get out and travel around the yard (she's no longer capable of doing this on her own).
Sis fell in love with the pond in our backyard so as a wedding present my husband & I gave them a pond liner and a pump. Friends would call and ask what kind of a gift they could bring for the newlyweds, considering they already had everything they needed, so I told them to have people write messages on rocks that we could set around the pond. With all of these my brother built his bride a beautiful pond with a gorgeous waterfall. Cemented all around the pond are the rocks with wonderful inspirational messages to both of them. We can pull Jan over to the edge of the deck and let her look down on her pond and see all the messages from people who love her. Bro even wired a light to shine on the waterfall. It's a gorgeous sight at night.
Sis used to love to camp, which she hasn't been able to do in a very long time. We brought our motorhome down and parked it in their driveway, my parents came down and we set up a campsite right there, gathered around, cooked burgers over a charcoal grill and had a wonderful time.
One of her hospice aides lives close so she brought over her side-by-side ATV, we put people on both sides of sis and away we went into the mountains. It didn't work out as well as we all hoped but she was able to go for a short ride and feel the wind in her face.
These two live in a lovely quaint little town out in the middle of God's country. They're located very close to ATV trails and the mountains, we can get there right from the house. They have horses across the street, some ducks down the road, sheep and birds galore. Her husband set up bird feeders all around the yard so sis can enjoy them whether she's sitting on her deck or sitting in the livingroom. I love taking her and the dog out for walks through her town.

I want you to know I'm doing as well as can be expected. Marjorie helped me have the breakdown I needed, although I wasn't real appreciative at the time. But we must always recognize the blessings we receive in life, and I needed a good 24 hour cry. Today is a new day and sis is still with us.

Love to all, and God bless you.
Vicky (my mom always used to call me Vicka Lee Babe when I was growing up, and my last name ends in sky :>)

Marjorie R. Wilcox · 10-16-2009, 10:54 AM

I never said your sister in law is neglected. I said you are preparing her for death instead of helping her to live. You have called hospice in so it is obvious.

I am a highly recommended caregiver for those who have a terminal illness and I have worked alongside hospice many times.

I have seen cancer, congestive heart failure, Parkinson's etc. and ALS. My husband has ALS and I have quit work to care for only him. He doesn't breathe when he sleeps... and even with the bipap, skips breaths. He fights aspiration pneumonia and more.

Read Joel's post on the opening page and you will see where we are coming from that you should promote living rather than thinking it is time to die.

I apologize you are upset, but it is in your plans to be. I can't do anything about that. I shouldn't have even tried.

Vickaleesky · 10-16-2009, 12:30 PM

I've talked to hospice concerning the oxygen versus the bi-pap (which they call c-pap). Jan does not have problems breathing while sleeping. The oxygen level in her blood is lower than they want it; therefore, they put her on oxygen. They are much more qualified to make that decision than you, I or anybody else who isn't a doctor. And yes Marjorie you are correct. You really shouldn't try to comfort. You don't do real well in that department. May God bless you.

joelc · 10-16-2009, 02:02 PM

Vickaleesky, l am impressed by your attitude and willingness to help and support you SIL. God will certainly bless you for it.

I am a bit concerned that the medical support you are getting might not understand ALS the way they should. Example: There is a huge difference between a Bipap and a CPAP. They are totally different machines and someone with ALS needs a Bipap as it has a lower pressure for exhaling, a PALS cannot exhale against the the constant pressure in a CPAP machine.
Also, the use of O2 is questionable and I urge you to read this article in my blog. It might shed some light on why a few of us are concerned.

Please do not take this as any kind of criticism of the care you are providing because it certainly is not. We have run into this a lot. Medical people do not understand ALS and have not done their homework to learn about it.

If you have any concerns or questions about what I have said please let me know. We are here to help and that is our only purpose.

http://www.alsforums.com/forum/blogs...-patients.html

BethU · 10-16-2009, 02:06 PM

Vicky ... it sounds like Jan has been blessed to find your brother and such a loving family to support her in this very difficult time.

May the higher power in all our lives give you all the strength you need.

cukita99 · 10-16-2009, 04:08 PM

vicky, i have ALS and have been confined to my wheelchair for about 4 years now. i have not been able to do anything for myself. the onlything i do and with a lot of trouble is spoon feed myself. i too have opt not to have a peg, trach, or anything else. i cant speak and havent in 4yrs. but my mind has not been effected. i just dont understand why u r dealing with death when people like us have lived like this for longer. doctors dont know how long we have. only we know how we feel and what we feel. u r sister in law is so lucky to have u and ur brother. i wish my family would take care of me but they dont even call me. my son is the only reason i keep going. so enjoy your sister in law and continue helping her and be strong for he r .

stephie · 10-16-2009, 05:40 PM

Vickaleesky-
Why is it that your SIL does not sleep at night? You mentioned that she is breathing well, so I am wondering if it is a comfort issue. Is your brother not sleeping because he has to re-position her often? My husband used to wake me many times during the night to help him roll over, but he usually sleeps all night now. He has a hospital bed and we bought another twin bed to put along side it. When we make the bed, it looks like one big bed. He hated the thought of having separate beds, but it really doesn't feel like they are. I just thought it might be something they could try.
Stephie