Dealing with the subject of death

[Vickaleesky]

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Hello, I'm a part-time caregiver to my sister-in-law who was diagnosed with ALS in October of 2007. Her disease has progressed rapidly. She has been confined to a wheelchair for almost a year, she's getting so weak now that she has trouble pushing the controls, she's unable to do anything by herself, she's on oxygen, and Hospice has stated that they don't believe it will be long before she's totally confined to bed. Her speech is getting worse by the day but she still talks about 'when she gets better'. She has signed paperwork, in her early days of the disease, stating that she does not want a feeding or breathing tube, or any medication that would prolong her life; only wants to be medicated 'for comfort'. Is it fair to her (or my brother) to let her believe she's going to get better? Are we best off to ignore her comments? OR, do we help her to understand she is dying, in order to help prepare her for death? It's so heartbreaking.

[Katie C]

Of course those are questions only you can answer but let me ask you a question. Has she experienced cognitive involvement with her ALS? One of the effects of cognitive involvement or frontal-temporal lobe dementia is "lack of insight"... meaning you could explain to her until the proverbial cows come home that her illness is terminal and it's just not going to make a difference.. she's not going to "get it." Which is only going to add to everyone's frustration.

Personally... I'd just redirect the conversations as needed.

[BarryG]

The important thing in preparing for death is to carry on living. Living means loving your family and friends, making good memories and making sure that others can carry on after you are gone. If your sister-in-law doesn't want to believe that she won't get better then you can take the initiative and arrange it so that she is connected with the important people in her life even if you don't say that is what you are doing.

Thank you for bringing up this topic and welcome to the forum.

Barry

[Vickaleesky]

Thank you so much for your comments. I don't know anything about the frontal-temporal lobe dementia but it is something I will ask the hospice nurse and/or doctor about when I'm there next week. The hospice nurse sat down with my brother (Steve) and sister-in-law (Janet) about a month ago and told them that Janet's time is near and they had to get all of their affairs in order. Apparently the nurse went as far as to explain what they will need to expect and how Janet will 'probably' die. But since she still talks about 'when she gets better', or 'when she turns 70 years old' (she's 51) maybe it is dementia. It's just sssoooooo hard to hear her say these things knowing she's going down hill faster with every passing week.
After Steve was informed to get all affairs in order he started making phone calls to all Janet's friends who have started visiting every weekend. He also had to call Janet's brother and father (who had 'forgotten' about her).

[GlenBrittle]

I would say she already has dealt with the death issue "back in the early days" and now continues to believe she will get better as a comforting thought.

I would leave her to her thoughts and make some happy memories for her while you can.

Glen

[BarryG]

Everything about this disease is so hard, for the PALS and also for those who have to look after them. As long as your brother knows what is going on and is making the arrangements then there is no reason to try to convince her. Be strong and let her be, she has been told what is going on by the hospice nurse so if she doesn't have dementia then she knows and if she does have dementia it is not important.

[Katie C]

Thanks Glen & Barry for putting into words better than I did exactly what I was thinking. We took care of the "legal stuff" immediately after diagnosis. Now, when Glen doesn't want to talk about stuff, it's ok. When he's around we just follow his lead. When he's not around, we talk about a grand Irish wake that's some day going to horrify my Italian in-laws. (It helps that my co-caregiver is our 24 year old son who lives here part time.)

Barry, I do believe I will be quoting you often with "If she doesn't have dementia, she knows... if she does have dementia, it's not important." Brilliant condensation of reality!

[Blackpool]

I agree, leave her to handle her death the way she is most comfortable. Her husband knows the truth. Peace be with you all.

[sjpowers51]

This was a great discussion on a difficult subject. My husband has dementia/MND and I have been struggling with the question as to whether or not he really grasps the gravity of this disease. I don't believe so. Early on we discussed feeding tube and trach and he seemed to be clear that he did not want either. I recently asked him and attempted to explain what could/will happen and asked him again and he said "oh!?" and that he wanted to think about it and left me to ponder .. what would I do if I had to make a quick decision? Katie you helped me refocus on the dementia... you are exactly right, the lack of insight is a huge factor.

I want to thank everyone. Your responses, each one of them, has been very helpful to me and given me new perspective. The forum is wonderful -

I have no idea at what point Hospice is needed but am sure I will know when the time comes. Thank you.

[Vickaleesky]

Immediately after diagnosis Janet wasn't my sister-in-law (so I don't know if she accepted death at that time), and although we (my family) were all devastated by the news none of us really knew Jan very well. S & J live 70 miles from where I live, and my elderly parents and I live closest to them (S&J). Although we are close as a family, we weren't so close that we kept in constant contact; you know, everybody had their own lives in towns far away, plus, we wanted to give both of them enough space to make their own decisions on how they were going to handle this. When Jan was diagnosed she and my brother had been dating for only 4 months. My brother, I'm so proud to say, chose to stay with her even though she gave him the choice to get out while he could. They married May 31, 2009 two years, to the day, after they met. Therefore, I haven't really gotten to know Jan until this past July when I chose to become her part-time caregiver. I'm ashamed to say that it took me so long to get involved. You know the saying, out of sight out of mine, and my brother is not the type of person who will ask for help (sugar coats things to keep others from worrying. He was a bit PO'ed with me because I emailed my siblings to let them know how bad the situation is). Anyway, after spending one week with them I knew I had to step in and become not only her caregiver but his as well. He's no spring chicken and all of this has been adversely effecting his health. So, I now trade weeks with my 78 year old mother.
Thank you to those of you who are providing comforting words and advice. I need it so badly. I'm having a terrible time trying to understand what I should or shouldn't be doing. And now I'm crying so hard I can't continue. Thank you again.
God bless you all.

[judylyne]

2 weeks before my husband died the hospice nurse said to him "you know your dying don't you?" He said yes and changed the subject. All he said to me after she left was How long do I have? He knew even with ftd.

[flyingaseagles]

I am not trying to get personal but that sounds like something my sister would do. She is a pentecostal christian. She says that when you admit something is wrong then that is not believing that you are being healed. So she will not even admit she has RA. I didn't know if this was the reason or not. I just thought she was believing for a cure.
I know you are having a hard time. It is so painful to watch someone go through this even more if it is a loved one. This is the person your brother loves and you are worried about not only your sister in law but now your brother. You are probably both so mentally and physically tired. Then there is your mother who is 78 she is at a age that she isn't as strong anymore physically or mentally. I know you worry about her health. This disease can rob a person, why has she chosen to not take the peg, Bi-pap or medication that just don't make sense to me. The feeding tube is not a major deal and even people that have trouble sleeping use the bi-pap. Maybe your brother does need to tell her the truth and tell her he wants her to prolong her life and stay around with him. I know it is a hard decision, because you want to do what is best for her. I don't know if it is religious reason's or not but it would be easier if it wasn't because some people are very strong in their beliefs. I am so sorry I wish I had better answers for you . Hugs to you all Debra

[brooksea]

Vsky:

Thank you for caring for your SIL.

[Anastasia]

Hi, I fully support what Glen has contributed to your dilemma, and wish you and your loved ones love, support and time to share so that you are left with some happy memories to look back on. Take care,Anastasia.

[indigosd]

How are you today? Thinking about you.

[Vickaleesky]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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/joelc/110-using-o2-amyotrophic-lateral-sclerosis-patients.html

[BethU]

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]

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]

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

[Vickaleesky]

I'm so appreciative of all your support. I asked the nurse yesterday about the bi-pap. She said they didn't have any indication that Jan needed it but because of my concern, due to everybody's help thank you so much, they are going to do the required test tonight to see if they need to put her on it.
Jan's problem sleeping isn't due to breathing problems. They don't want Jan sleeping in the same room with Steve because she moans very LOUDLY when she's asleep and she calls out his name; although she's sleeping. This keeps waking him. She said she dreams a lot now whereas she doesn't remember ever dreaming before.
A hospital bed was supposed to be delivered yesterday but they didn't have the pressure pad (mattress?) they needed so now it's supposed to be delivered today. The nurse told me this will be much better for Jan in the long run because she's experiencing (and forgive me if I get this wrong) skin tissue breakdown, or deep tissue breakdown? (Sometimes an over-abundance of information gets me confused). One night the oxygen tube slipped off her ear and she laid on it. The next morning she had a horrible sore. I'm told this is happening all along her left side because that's the side she prefers to sleep on. She can't sleep if she's on her back and her right side is the side where she experiences the biggest percent of her pain. Pain is what wakes her. So this pressure pad is really supposed to help, I'm told.
I hope not everybody believes that Hospice is the 'last resort'. When I called to get information I was told that that is a common misconception. Hospice is there to help improve quality of life for anybody who requires it. And they have been fantastic. Jan's aide has been helping one of her patients for 7 years. Hospice provides counseling, for the whole family if need be, they provide classes at the hospital for caregivers, they provide social workers, nurses, aides, required machinery (lifts, chairs, beds), etc. We didn't bring them in because we wanted to put Jan to bed to die they came in to help us when we didn't know where else to turn for help; because we weren't satisfied with the so-called assistance she was getting from the 'professionals'. Fantastic, wonderful, amazing network of people. We're fortunate to have them.
This Monday we're going to have a home visit from the nurse's, aides and one of the doctor's on the board of directors of Hospice. I want to get together a list of questions I need to ask. Joel, I will go in and read in the website you provided (thank you) but if there are any questions that anybody can think of that I should be asking I will truly appreciate your input. And I do appreciate your input.
I wish I could change the title of this thread, BELIEVE ME. When we were first told that Jan is in the late stages, and although nobody can predict exactly when, we all felt like we'd been hit by a bolt of lightning. That's why I had to seek some emotional support and sought out this group. I knew I had to try to be as strong as possible so that I could help my brother through this. He was devastated, and my attention immediately turned to him. And I'm ashamed to admit we thought it would be only a matter of a short time. Thank you for helping me return to the reality of the present. She is his life, and he is hers, and all we want for them both is to have all the happiness they can possibly have in the time they have left. After all, we're all born to die and none of us know when that time will be. Live each day as though it's our last.

Cukita, we have cousins in San Antonio. We've been wanting to get down there soon to visit (I only say down because we live north of Texas and that's the direction on the map...north up, south down :>). I would absolutely love to meet you, and spend time with you. Would meeting be a possibility?

[BethU]

I'm glad you clarified the misconceptions about hospice that are out there. My husband and I talked to local hospice reps last summer when my FVC was 35% and his kidney function was down to 22%. Both of us have improved a little since then (no thanks to doctors ... our conditions just fluctuate a bit).

The program sounds wonderful ... with MUCH NEEDED equipment and services with no extra paperwork or hassles ... and you can go on it or off it at any time. They said they have had people in their hospice program for years, and they just renew the doctors orders every six months.

Frankly I am eager to get on the program myself, as I am exhausted by all the endless paperwork and decision making, and would love to have regular nursing assistance and someone take over some of the day-to-day responsibilities. I can continue my ALS clinic treatments even though I go on hospice .... have already checked that out .... and we both can continue our present medications and treatments, etc.

I think hospice needs to be better understood for the remarkable resource it is for seriously ill people.

God bless, Vicky. Hope Jan is made more comfortable and her skin problems solved.

[brooksea]

Vicky,

I hope to see many more posts from you regarding you, your brother and SIL! Many more, for many more years!

It sounds like all the things are falling into place that are necessary to provide her with quality care, so that she may be comfortable and able to enjoy her life.

Most of us are aware that hospice may be called in when things become to overwhelming for the caregivers to take care of their pALS and themselves.

Regarding the BiPap, my husband's breathing is near 100% and sleeps with the BiPap most of the time. Of course, he prefers not to, but it does help him with overall energy and clear headedness the next day. Most Neurologists that treat ALS believe it is better for the patient to start the BiPap before they actually are in need of assistance. There are different face masks to choose from and she should be able to find one that feels the best for her. If you can get one and she will use it, you may want to use stickers, (such as flowers - I don't recommend the Darth Vader sticker my son preferred), to decorate it.

Also, a cough assist helps expand the lungs and helps dislodge anything that may be stuck. My husband also uses this device, even though he feels it isn't necessary, it makes him feel much better.

Both of the above devices are non-invasive and can really improve the quality of a pALS life.

Making things look as normal as possible is also helpful to some (like my husband), and it sounds like your SIL may feel the same way.

[cukita99]

i would to meet u, but im in el paso,tx, not close to san antonio.

[Vickaleesky]

Cukita, El Paso would be on the route between us (Utah) and San Antonio...even if it wasn't, I could make it be :>)

[brooksea]

To clarify my post above:

Most ALS Clinic Neurologists that treat ALS believe it is better for the patient to start the BiPap before they actually are in need of assistance.

Hope that helps!

[Vickaleesky]

Joel, just went in and read your website. WOW!!!!!! I'm going to print that out for our home visit Monday. Thank you sssooo much! I can use all the information my little pea brain can absorb :>)

[Marjorie R. Wilcox]

She probably doesn't have ALS then and you are welcome to your opinion of me. Can't win everyone.
My apology isn't accepted either, I see. All I can do is relate it. I've never caused anyone a breakdown
before... on the contrary.

[stephie]

Marjorie-
I am confused! Why are you saying "she probably doesn't have ALS, then?" Are you refering to the SIL of Vickaleesky? If so, that would be a bold presumption. (Maybe I misunderstood whom you were referring to).

It is wonderful that your PALS can still get out and enjoy life. It gets harder to keep the same outlook when your loved one can not walk, talk, eat or move, but we try!
Stephie

[maryam_rastkar]

dear vickaleesky
you know that my father is in that conditions too
-he is not that bad , but mostly like her-
he knows that there is no treat ,
he speaks about death
and he's got his testament managed.
i think being prepared for death is not an easy thing
you know it is so painful and heart breaking
i wish he'd got some hope

[BarryG]

I have said this before but I'll say it again, this is a SUPPORT forum so we should all be trying to SUPPORT each other no matter what our own personal situation or abilities.

We all know (or at least we should) that this disease affects each of us differently and that what works or is possible for some will not be possible for others.

Let's all be supportive of each other because I for one have no use for a criticism forum and I suspect I am not alone.

[thelma313]

Barry, you are most definitely not alone.

Vicky, I think your sister-in-law is blessed to have connected with a family like yours and I am glad you found this forum. Tell your SIL that there are people out there rooting for her. You and your family are in my thoughts...

[Marjorie R. Wilcox]

The subject is "Dealing with death". I speak of life, although my PALS could be dying. Regards to all with all the compassion that can be mustered. Attitides cannot be programmed so I'll be more careful what I say and how I say it!

[JanetAnnGarcia]

This is Vicky. I'm on my SIL's computer (forgot to bring mine).

The home visit went really well yesterday evening. The doctor is young, and admits he has a lot to learn about ALS. He appreciated the advice you sent Joel. He believes a BI-PAP is a very good idea now but Jan is against it. She wants to wait for her Neurologist to tell her she needs it. She doesn't see her Neurologist until mid-December. The doctor explained the benefits and that this really would be a good route to go. She's so strong-willed and stubborn...and not just about this. My gosh, what to do? We can't help her if she's not willing to let us.

[thelma313]

Hi Vicky,

Try explaining to her that the Bipap can actually help to increase her lung capacity and is a totally non-invasive breathing machine. It's just like the C-pap (widely used by people with all sorts of sleeping disorders) except it differs mechanically but there is absolutely no harm in getting one now and trying it out. If she hates it or wants to wait, tell her it can sit on the dresser until she is ready but my guess is she will appreciate how much better she sleeps with it on and will want to use it. Anyway why not have it in the house, ready and waiting for when the time comes?

You're doing a great job! Your sister-in-law is lucky to have you!

[halfin]

Hi Vicky - None of us can be there with you and appreciate all the complicated problems you are facing. Please don't take this suggestion the wrong way, it may be completely off base. But earlier you wrote, "They don't want Jan sleeping in the same room with Steve because she moans very LOUDLY when she's asleep and she calls out his name; although she's sleeping. This keeps waking him." I don't know if they have gone ahead with this and are sleeping separately. But my thought was, maybe with the bipap Jan would sleep better and quieter, and maybe that way they could sleep in the same room.

Again, I understand that you are only able to describe a simplified version of a complex situation, so there may be many reasons why this would not work, but I just thought I would mention it in case it sparked any ideas for you.

[lgaudin]

I am new to this forum, and it is my Mother in Law who has ALS. She has had it since late 2001, and is in the very final stages now. When she got pneumonia about a year and a half ago she had to be hospitalized. (She and my Father in Law were living in a wheel chair accessible condo with nursing aids coming in 3 times daily)As the weeks went on and the doctors kept her in the hospital she started to ask when she was going home, that she was better, and wanted to go home. The fact was she was worse and her ability to breathe had gone downhill drastically. They also knew that my FIL (who was then 90 years old) was no longer able to take care of her. We wondered what was going thru her mind and how could she not realize how bad things had gotten. Mom is very strong willed and I'm sure she was willing the "badness" of the disease away.
Maybe it's a coping mechanism, it's human nature to hope. I don't know. Mom is now maybe a day or two away from passing on and I'm feeling so lost. I wish there was something I could do to comfort her but there isn't really.
Laura

[JanetAnnGarcia]

Jan & Steve have started sleeping in separate rooms and it hasn't been easy at all. Every night they go through the same thing, Jan doesn't want to go to bed without him, they argue, they both end up totally upset and nobody has a good night. Jan doesn't want the Bi-Pap (the doctor said he was going to send it through the insurance, is sure it will be covered and will have it ready when Jan is ready). The doctor explained to all of us how much this would help (he's been doing his homework). It just seems like she's fighting us on so many issues. She's depressed, he's depressed and angry, my mother is angry, my husband, sisters and dad are worried as all get out; now not only about Steve & Jan but my mom & me also, I'm depressed, angry and have a lot of anxiety. Jan is becoming so very difficult to understand and I know that frustrates her. It frustrates all of us. But she gets to a point where she throws a temper tantrum; shakes her head back & forth, yells no (this she does really well) and tries to get us to go away with a wave of the hand that she still has some limited use of. She uses "I'll think about it" when she wants us to get off her back; i.e., the Bi-Pap, the sleeping arrangement (BEFORE the decision was made for her), going shopping, going for a walk... I finally decided she needed to get out of this house so we went lunch today with her aides, then took her shopping to her favorite store. She seemed good until we got home. I brought dinner back for Steve & mom and we sat with them while they ate. At one point she decided she wanted to go into the living room so I started backing her up and she threw another tantrum. She said I wasn't going backwards; which I was. My brother snapped and told her to quit being so impatient which started her crying so badly she needed to be sedated; which my brother absolutely hates to do. I think he thinks it's better for her to learn to handle the situation rather than escape it. WHAT DO I DO? I'm feeling so lost. We're all feeling so lost.

[BethU]

Janet ... ask Jan's doctor to see about medication for Jan for emotional lability. If she switches from anger to tears and cries so hard she has to be sedated, that's another of the byproducts of ALS. Her crankiness and stubborness may also be a result of ALS ... I don't mean that she is reacting "normally" to an extremely frustrating situation, but that ALS produces unnatural emotional expressions and responses. It's chemical actions in the brain that she has no control over.

That doesn't make it any easier for those around her to deal with. I'm so sorry your whole family has been affected. It is always those closest to the PALS who get the worst of it.

Your doctor can research what kind of medications will help Jan. Speaking from experience, these outbursts and the irritability ... and the indecision ... are as hard on Jan as they are on you. Unfortunately, they are very characteristic of ALS.

Hang in there. Your family is giving her terrific support, and she is blessed to have you.

[brooksea]

Beth just replied as I as typing this.

My husband is on Lexapro. As in Beth's case, my husband was laughing and crying and pitching fits too! Now he is so much better.

I know how those emotions can get the whole family embroiled in a never ending cycle of anger and pain. No amount of negotiating with your SIL will work to help this if she has EL. She will have to rely on medication to stop it. I found the more I tried to reason with my husband about how UNreasonable he was being it just backfired.

If you do a search on this site re: emotional lability, you can see what others have taken to help this part of the disease.

Good Luck!

PS - Your brother and you for that matter may need to look into getting some antidepressants as well to take care of yourselves.

[JanetAnnGarcia]

Thank you for the advice. I'm going to research EL and have the information ready for the nurse to deliver to the doctor.

Jan is currently taking Citalopram, plus Lorazepam. My brother FINALLY (about 2 weeks ago) got on Lexapro; he refuses to take a sedative. I take Celexa, plus Xanax (as needed, which is becoming more frequent). My sister is on Lexapro, my dad is on Prozac and my other sister is on Citalopram. And right now I can't remember what it is my husband takes :(. I'm going to make a doctor appointment for my mother so she can get on an anti-depressant & sedative.

Please pray for us. We need all the help we can get right now. God bless you all.

[JanetAnnGarcia]

I just got done reading on EL. I hadn't realized the Amitriptyline Jan takes is for this condition. I'm going to talk to the nurse about increasing the MG, at least on the Citalopram and possibly the Amitriptyline. Jan is only on 20 MG of Citalopram, I take 40 MG of Celexa and I'm feeling like I may need to increase.

[LaurieS]

Just a thought, but I would get a pyschiatrist to handle these meds. I'm not in this field, but I seem to recall from my pharmachology classes that Amitriptyline can cause hostility as a side effect. Also, increasing the dosage is not always helpful. These kinds of meds (antidepressants) can be tricky and the Dr.'s recommendations should be followed exactly.

Maybe you already have a psychiatrist involved, so maybe my post is not helpful. Anyway, these are just my thoughts. I'm trying to help.

[BarryG]

Hi Laurie, just thought you should know that Janet Anne passed away on Nov 11, 2009. Thanks for your information anyway, I tried Amitriptyline for excess saliva but it caused my blood pressure to drop too much so I quit it. I did not notice any antidepressant effect but maybe it was because of the dose I was on?

[LaurieS]

Hi BarryG, thanks for responding to my post. I am a very first time newbie here, as someone very close to me is only just now getting started with his very first appointment to the neurologist. I hope for the best, but I feel awful.

When it comes to drying up salivary flow, Amitriptyline works great and very dependably. When it comes to improving mood, the perfect dose is a bit harder to find. Often times, less is more. Generally, the lowest possible dose is perscribed in the beginning, which is great because if there are unwanted side effects, then they won't be as dramatic.

However when it comes to mood, the psychiatrist is most experienced at determining if any better result can be gained by increasing the dose. I'm aware that other kinds of doctors will try to ballpark what drug will work best for most people, but I rely on the person who has the most experience with this stuff to come up with the best choices. I hate to say it, but sometimes we have to go with something that offers a little improvement. We haven't found the magic bullet for improving the mood in everyone.

Be real careful not to quit any anti-depressant abruptly, and follow orders exactly as bad things such as nightmares can ensue.

OK, I climbing off my soap box now...... I hope I've thrown out some ideas that can help in some way. The good news is that there are plenty of good meds for drying things up and I'm sure you may well find the best medicine. In the meanwhile, there is laughter and love. ^_^

God rest Janet Anne.

[BarryG]

Welcome to the forum Laurie.