Taking ativan says he feels worse???

[Gina]

Hi all,my husband was put on artivan last week for his breathing which is very shallow.It looked to me like he was suffering and he agreed.He often has trouble expressing himself and his whole life i think he was encouraged to ignore pain,not by me by his familly.....anyway this morning he could not get out of bed looked like he was struggling to breathe again i asked him if he wanted another pill and he said no.Do you think that it is the pill that is making him feel worse or just the progression of the disease.He was up the night before with bad heartburn which he has never had before.I will phone the doc.and see what she says but i just wondered if anyone else had,had the same experience.I just do not want him to suffer so i dont know what to do......thanks for listening.....Gina

[jimercat]

Gina,

Ativan is for anxiety. Did the doc think your husband was maybe in a panic and this caused his difficulty breathing?

Here is some info on Ativan: www.drugs.com/ativan.html

Before taking Ativan, tell your doctor if you are allergic to any drugs, or if you have:


asthma, emphysema, bronchitis, chronic obstructive pulmonary disorder (COPD), or other breathing problems;


Hope you can get your husband the help he needs!

[Gina]

Hi jimercat!Thanks for your quick response.My husbands resperatory has been of the biggest concern for the last year....a little over a year ago he was given only 2 wks to 1 mont by not just one but two docs.One being the lung specialist and the other was dr.strong in london.He seemed to stay about the same for the last year but now he seems to be struggling more to breath.I took him to our gp. last week who now looks after him and she consulted with the lung specialist and they felt that ativin was the best choice to make him more comfortable.He was doing fine on it and seemed to be getting the relief he needed but did sleep more.This morning however he did say that he thought that the meds were making him worse.At this point i am not sure whether his disease is progressing more rapidly or it is the meds...i fear that it is the first...thanks for the info. i checked out the site....yes i also know that it can be used for anxiety ....thanks again ...Gina

[jimercat]

Gina,

Is he on a Bipap or does he want to be? I hope he is not declining further. Good Luck and let us know how y'all are doing.

[Gina]

oh yes been on bipap for couple of years now and oxygen during most part of the day....his appetite not good either right now so maybe could be touch of the flu or something...any thanks and i will keep you posted.....gina

[landscape]

Hi Gina
I can appreciate your problems. My PALS has been on Bipap for 5 months approx, his appetite is almost nil and he recently had a urinary infection which caused a respiratory crisis. He is now on morphine for his breathing difficulties and that has helped a great deal.
Has your husband had a injection to protect him from 'flu? It would seem that when people are in such a precarious state any small difficulty can push them into a very difficult situation.

We are fortunate in having very good palliative care support. They do say they wish they'd been involved earlier so don't leave it too long before you get them involved--they are so much help!
p.s. how are your PALS carbon dioxide levels? It's normally the CO2 levels that are the problem. Do you know for sure that your PALS oxygen levels are down?
My PALS oxygen levels are fine.

[quadbliss]

Hi Gina,

Is your husband's Bi-Pap inspiratory pressure setting maxed out? If not, it probably needs to be turned up (immediately). Also, I believe Ativan relaxes the muscles. This could result in a temporary weakness of his breathing muscles.

Mike

[Gina]

landscape thankyou for your input!His oxygen levels are fine but they did check him while on the oxygen machine.....is that normally how they do it?? the people from pro resp were in on wed.to check via docs.orders...i have ho ideal what his co2 levels are.Where do you get that info.?Yes we both had a flu shot last week. Quad I hadnt thought about the bi pap settings you could be right but im sure the people who came in to check his oxygen levels would have mentioned that as they provide the machine.We do have the case worker from hospice coming in next week to match him up with a suitable companion so that i may get out to do some errands if none of my family are available....Some of this is just so overwhelming and i pray that i am doing a good job taking care of him but i get so confused with everything at times....do you think it would be a good idea to add the oxygen to his bipap at this point...p.s. forgot my doc.had fri.aft.off so couldnt get a hold of her but i will if anything gets worse.He says now that he only wants to take the ativan at night before he goes to sleep.....thanks all and any further info is appreciated i feel like im swimming in a pool of paperwork and doctors and everything else!!!!I know in need to relax but dammit thats easier said than done.....thanks ...gina

[landscape]

Gina, it does not make sense to me that they check his Oxygen levels at the same time he is on supplementary oxygen. That doesn't tell them whether, or when he needs it .

The carbon dioxide levels have to be checked by taking blood from an artery in the wrist.

Do you have access to an ALS clinic or a doctor who is very familiar with ALS?
Here's what I would do on Monday (unless you have an emergency) when everything is open again :

1. Call the medical person who has most knowledge about ALS and tell them that you want your husband's carbon dioxide levels checked. Don't give up until they have done it.
If you have access to a specialist in ALS and lung function, that's the person to contact.

2. If they check his oxygen levels again make sure they do it at a time when he has been off the oxygen for as long as possible. If they are normal at that time, ask some questions as to why he is on the oxygen and when he needs it. Activity (even talking) will change the levels of oxygen so a reading at one time may not be the same as a reading at another.

With ALS the lungs themselves are normally healthy, it's the mechanism for drawing air into/letting it out of the lungs -- the muscles including the diaphragm -- that's at fault. The most frequent result of this is increased levels of carbon dioxide that make people sleepy, fatigued, and less alert.

If the lung tissue is healthy it is my understanding that most PALS can usually make good use of the oxygen that is present in the normal air if they are using a Bipap to pull that air in.

My husband's Bipap levels were prescribed by the pulmonologist and cannot be changed by the Respiratory tech. without another prescription or discussion with the doctor. Do you know who prescribed the levels on your husband's Bipap?

The use of oxygen can increase carbon dioxide levels in the body so I'd really push getting carbon dioxide levels done.

I am certain you are doing an excellent job caregiving--and yes, it is overwhelming. Be comfortable with what your husband chooses to do about taking the Ativan.

I hope your weekend is a calm one.

[Gina]

Hey landscape thanks for all your input a little busy now so i will post again maybe tonight when i get more time...Glen is feeling a little better today thinking maybe now could have been a touch of the stomache flu!You raise some really interesting points and questions...ill get back to you....Gina

[Gina]

landscape &quad...O.K here i am again husband busy watching the hockey game so now i have a little more time to respond to your questions.First let me start off by saying that my husband was given 2-4 wks a year ago november.At that time he was also sent to a lung specialist in our area who basically said the same thing.Since that time we have not gone back to the als clinic because he just did not have the strength to go anymore.Our g.p. is our primeary dr.and an advocate for us.Glen is her first patient with als but when a problem arrises she consults with the als clinic and the lung specialist.She is such a kind,compassinate woman and ready to go the extra mile for us concerning my husbands care.The last time i saw her she told me we need to keep in closer contact..hmm what doc. says that anymore?So armed with all the questions that you landscape and quad having given me i will be able to ask the right questions and get some answers.My husband says that his bi-pap is already at max settings,he has a better memory than i,and the last time he was given any blood test was when he was last seen by the lung specialist a year ago.She at that time told us that if he indeed used the oxygen it may quicken his progress.Those two appts. were almost a blur to me because of the bluntness and willingness to give a time period for his prognosis and i am afraid i totally lost if and had to leave the room.Fortunately my daughter was with me so she stayed with him while i tried to pull myself together.Damn docs. why do they say stuff like that it is now a little over a year and he is still here ....a whole year for me sleeping beside him wondering if he were going to wake in the morn.and a whole year for him to replay those words in his head.Like i said in my earlier quick post he is feeling a little better today thank goodness but still will not take the ativin.....thankyou for all your concern and guidance through another tough time.....god bless ....gina

[landscape]

I'm sorry that your experience with the lung specialist was not a good one, Gina. We are fortunate in having a pulmonologist who is works in the ALS clinic and so is very good. I think it is important to have a lung specialist who is thoroughly familiar with ALS.

You might wish to print off the article below and give it to your GP. 'Hypercapnia' just means 'too much carbon dioxide in the body' and the article is about the effects of using oxygen if your breathing muscles are not working well because of neurological problems.
http://www.mayoclinicproceedings.com/inside.asp?AID=3830&UID=

Do you have Palliative care teams in your area? I can't say enough good things about the support they have given us. Could you ask your GP about them?

Let us know how you manage next week.

Many people are surprised that morphine can be used to treat breathlessness. Obviously it is only used in certain circumstances and would not be prescribed early on with ALS. At my husband's stage of the disease it has been very helpful and has had no side effects . . . other than constipation . . . but that is easily fixable!

[Gina]

Hello again landscape thanks again for all the info.and concern.My husband seems to be doing much better tonight....must have been a stomache flu!We did consider morphine for him and our gp.did consult with the lung specialist whom he was referred to by the als clinic and they both agreed on ativin at this time.I think because of the prognosis that he was given i was not concerned about his use of the oxygen but upon further examination and reading of your post maybe i should be discouraging him from using so much of it during the day.My gp. is so approchable that i am sure she will be willing to listen to my concerns and she has even voluntered to make a house call if need be.I have warned him about the use of oxygen and so did the lung specialist but i figured at this stage of the game whatever makes him more comfortable.I am tottally confused now as to what to do and if i should have not let him use it....damn doctors if they hadnt given me a time limit im sure things would be different now.He has suprized all of them !!!!!I will let you know what our gp. has to say....p.s. he did ask for his pill again tonight!he is a veeery stubborn man so im sure hes gonna be around for a while just to spite them all!!!!!!.......thanks again Gina

[jimercat]

Gina,

I'm praying for y'all! Good luck!!!Wonderful you have a great GP!

[landscape]

Gina, I agree with you about letting people (particularly husbands!) choose what they want to do. I think it's important that we have control over our own situations whenever possible. Your husband has all the necessary information so it is in his hands in terms of what he wants to use to make himself feel comfortable. For all of us, being in the driver's seat reduces anxiety.
. . . and stubborn is good!!

[swmn]

hi Gina -
Still thinking of you and praying for you both - hope his situation improves again today. good luck w/ theGP- :)
Landscape: wow - lots of great support and information to share - Thanks for your dedicated support on this thread.:)

[Gina]

Hi everyone thanks so much for your support and guidance.After thinking about all the input and talk about oxygen levels and co2 levels i must admit that i am a little anxious.The more i thought about i the more i thought that maybe it is better if we do not know.In retrospect i am thinking that when the two docs.said that he had such a short time left it must have been becuse of the levels of oxygen.After living with this prognosis for over a year now im not sure if it would benefit either one of us to know just how much the levels have worsened and may just increase the allmost unbearable anxiety that we are both feeling right now since thier really wouldnt be much we could do about it anyway.I thank you for all your input and help but please understand that i just want him to be comfortable.Tomorrow i will have to go to the lawyer and get a copy of the DNR...order.After reading some of the post of people who were so devastated that when thier loved one did pass that the paramedics did do cpr.without the order i scared me so that i want to make sure that when his time comes it will be as peacefull as possible.It is just so painfull to watch him suffer and i am close to tears because i want to make it easy for him.I hope i dont sound ungratefull but at this point i almost think that ignorance might be bliss.I took him to the arena to watch our grandson play hockey the only time he really leaves the house.My other son was thier with his new baby and my husband held her on his lap the whole time in his wheelchair.He said to me on the way home with tears in his eyes "She is just so beautifull and i will never get to know her"then he said to me are you o.k. and i said yes at first and then i said NO..."i hurt for you too ! i hate this for you "We both believe that thier is life after death and i said to me "yes you will know her wont you come around and be thier to watch over us?"He said "Yes"....Dammit this disease is so hard on the whole familly and i can see it in thier eyes and i feel so damn helpless...i dont want my kids to hurt and i dont want my husband to hurt.........Gina

[landscape]

Gina, we must all do what we feel most comfortable with. Any words offered here are merely set out as suggestions, to be left or taken as best suits you. Wishing you both well . . . and do let us know how you manage.

[jimercat]

Gina,

I'm so sorry you are going through this very tough situation. We are all thinking of you and your family.

[Thumbs Up]

Gina, I wish Brampton was closer to Cambridge so I could give you both a big hug. God bless, Norma

[Gina]

Thankyou Norma,looks like another tough night here i am just finished decorating my little tree and feeling very much alone and afraid.My son and grandson came over to watch the hockey game with my husband i thought it would be a great time for me to go out and do some shopping.He seemed fine today and did not want to take his ativin pill about fifteen minutes after i got home he asked me for his pill and said i dont feel good tonight it is as if something in my body has let go.While i was gone my son told me that he told him that he didnt think he had much longer to go.He has said this before so iam hoping it is just because he was suffering from not taking the pills he was perscribed by the doc. last week because he thought that they were making him feel weaker.I think that the cruel fact is that the disease is just progressing.He went to bed before the game was even over and told me to tell my son and grandson thankyou for coming over to watch the game with me.It is like a nightmare that you can never wake up from and you know even when it is over thier will still be so much pain.Sometimes i wonder if i will ever know again how to be happy!Life just seems to be so cruel right now!!!! thankyou for listening....Gina

[swmn]

hi Gina -

I couldn't sleep because I was thinking of you both - and concerned about how your day went. I was relieved to see your post. I'm so glad your son is coming over to watch Hockey w/ him so often. Just wanted to tell you I'm praying for you guys. Wish I could give you a real hug {{{ Hugs 4 U}}}

[Thumbs Up]

My prayers are with you. Norma

[Gina]

Hi swmn and Norma,thanks so much for your support and prayers !My husband is feeling a little better this morning and i am just so tired could not sleep at all.Hospice is coming this morn. to talk about getting a companion for him but you know i dont know if i could leave him with anyone now except a familly member.I still havent heard back from the lawyer on the dnr orders.I phoned yesterday and of course he wasnt in the office so i left a message..still waiting for the call.My little tree looks awesome and i cant wait to see it tonight with all the lights on!The nights im finding are always the hardest and thank you guys for helping me get through another tough one.......p.s.Things always look a little brighter in the morning.....Gina

[landscape]

Gina, in this province you need a physician, not a lawyer, to sign a DNR order for the home. Just wondering if it was different in Ontario.
We were told to put my husband's order on the fridge as that's where the paramedics would look. But I believe the paramedics are notified when an order such as this is completed. In this province (or this city) you can choose among three levels:
Level 1 = All care including CPR
Level 2 = NO CPR - All levels of care other than CPR
Level 3 Palliative care - comfort measure only.

We have been told that if at any time my husband changes his mind, the order can be changed to suit his wishes. At all times they will respect his wishes.

Let us know how the Hospice visit goes.

[Gina]

Hi landscape i am really starting to get confussed about this whole issue .I phoned my g.p and she said not we do not do that and suggested that i call the hospital.I explained that we had done the living will and that it was all done by the lawyer so then she suggested calling the lawyer.I called the lawyer and left a message and he is yet to return my call.My daughter in law whom has just bought a house and used his services says that he is out of town a lot and it may take a while.Dammit why does everything have to be so complicated!! .....The caseworker from hospice came today to talk to Glen and i about getting a companion for him while i take care of errands and such.My daughter who is also a social worker attended the meeting which i am thankfull for because it is always so nice to have another set of ears.She left a whole lot of info.which i still havent found the time to read but will tom...I think with homecare and hospice we will be able to manage much better.Sometimes i just get so overwhelmed especially now with xmas coming and all i am finding i can only take one day at a time........thanks so much for your support and once that order is in my hands i know i will feel much better.......Gina

[Icanmanz]

Gina, hi! I have been reading some posts, and my heart aches for you dear. I know the pain, the helplessness, anxiety, etc, that you are experiencing. Yes dear, it does hurt a lot to watch our loved ones suffer. Has your husband lost weight? Does he still have his speech? I hate to ask these questions. You don't have to answer them if you don't want to. I'll understand. When my son's time was near we were all gathered around him, and di not sleep at all that night. I was numb, had no feeling, was not sleepy. When we started giving him his morphine, he started drifting into a sleep. He asked me to sign the DNR for him, because he did not want any resucitation(sp?) He started showing real signs of departing Sat. evening, by Sunday 5:50 he was gone. The hospice nurse told us that someitmes they could be like that for a week or so. I thought to myself, "oh no" I did not want to see my son like that. I talked to him, and told him if he was ready to go ahead. I talked to him the whole time, and assured him I was going to be alright, I just wanted for him to rest. I said my good byes to him, and thank God it did not take him a long time. Gina, we know our loved ones are going Home, so what's the use of wanting him here longer, knowing that there is no cure. I am not trying to sound morbid, I just wanted my baby at peace, and I thank my Father he answered my prayer. May God bless you and your husband. Keep us posted.

Irma

[AngelManFL]

Hi Gina, I'm so sorry for what your going through right now and will continually keep you and your family in my prayers. I was actually quite surprised they Rx Ativan for your husband. If it is anxiety they looking to relieve why not Xanax? Xanax is mental relaxer not a muscle relaxant. Xanax slows racing thoughts and obsessive thinking which in turn calms the person's "mind", Ativan is a physical sedative which causes the physical 'body' to relax. My mom takes Ativan for your heart conditions, we recieved these differences about the meds from heart Dr. This may be the reason he doesn't want to take it. You really should contact your Gp and ask about the differences. I'm by no means an expert, but it strikes me odd that if he is having trouble breathing that they would Rx Ativan. Thank you so much for your thoguhts and advise you have given to me lately - you are an amazingly strong person - even if "in the moment" it may not seem that way..

God Bless.

[landscape]

Gina, I'm glad you are getting support from Hospice. If your daughter is a Social Worker perhaps you could give her the task of finding out how to get the DNR order. Could she ask the caseworker from hospice? Or your ALS Society? Or your ALS Clinic? Since a lawyer has no medical degree, I really don't see that they could sign such an order.

Re: the Ativan, I believe it is the drug of choice in this circumstance because it does permit some bodily relaxation and eases the anxiety and thus allows the breathing to become easier. My husband also has a prescription for it and now that his breathing is so badly compromised. I give it to him (in addition to the morphine) if the shortness of breath becomes frightening for him. He is now also on oxygen since his O2 levels dropped considerably. It is entrained into his Bipap. However the Palliative care nurses and Respiratory therapists check his levels frequently with an oximeter (i.e. sometimes several times in a day).

[CindyM]

Hi Gina. I don't have much to add but wnated you to know that I am think of you today. Your task, helping your DH through this last transition, is not easy but hopefully your load will be a little lighter now that Hospice is around to offer support. I am surprised that hospice does not know how to det a DNR. Hopefully your daughter will come up with the answers.

This is hard on you all. I hope today goes as easy as possible. Blessings and peace, Cindy

[Icanmanz]

Cindy, this is one thing I cannot understand! I always thought that Hospice people always had DNR documents with them, whenever they feel that a person is near departure. Whenever my son departed, before it took place, he asked her for such documents, and she handed him one. He glanced at it, and then he motioned for me to sign it, and I did. I only hope that she gets a hold of one, she has been through so much already, bless her heart!

Irma

[Gina]

Oh my goodness turns out that i allready have the dnr order with homecare.Our homecare nurse just left but before she did i told her of my concerns and trying to get the order as quickly as possible and she said "oh gina dont worry we allready have that"I was so relieved ...like i said in an earlier post that last year has been so stressfull that i had totally forgotten and she showed me in the book where it was!Maybe a little bit of denial involved as well on my part..lol...I want to thank all of you wonderfull people for your prayers and support.Irma you are such a kind and compassionate woman and angleman thank you so much i only hope i am as strong as you seem to think it dosnt always feel that way to me!Cindy you too have helped me stay strong....God Bless you all for being who you are....thankyou again....Gina

[Icanmanz]

Gina, I am so happy you have the dnr. I really can't say, don't worry when the time gets here. Of course you have to worry, and hurt some. I hate to use these words, but what else is there to say? Am I supposed to gurantee you that you are going to be okay? I'd be lying. It is the natural thing to do, to hurt and cry. Let me tell you Gina, it is good to cry. It relieves you. The thing is, just think of the peace that your husbandis going to encounter. When I witnessed my son taking his last breath, I felt my heart breaking in a million pieces. Of course I cried. I cried with him, held him, kissed him, prayed with him. As I hovered over him, I felt like I was lifted, and experienced a feeling of comfoert. A feeling of letting go, and allowing our Father to take over. I thought to myself, "You are in good hands. It is time to say our good byes." Right then I knew he was gone forever, and to let it take place in peace. Be strong, turn to your Father. He will be there to comfort you. I hope I can be of a little help. Keep us posted, and let's say if it's time for your husband to depart I hope he goes peacefully1 May God bless you, and your husband. Gina, take care of yourself!

Irma

[JACKIEMAX]

My Husband's Breathing Level Is Now 51, And Our Dr. Would Not Prescribe Either Morphine Or Ativan Altho He Is Suffering High Anxiety, And Uses His Bi-pap More And More Now. The Reason Is That It Does Interfere With The Ability To Breathe Well, So He Prescribed Buspar, 3xs A Day. It Has Not Had Time To Kick In Yet, But Please Everyone Be Very Careful With Morphine And Ativan Unless The Patient Is 'just Being Kept Comfortable At The End.'

Jackiemax

[landscape]

Thanks, Jackiemax, for the advice. My husband is close to the end of his journey and so the morphine and Ativan keep him comfortable. I can see that otherwise they would not be appropriate. This isn't an easy road is it? But we have had eighteen months in which our lives have been enriched in many ways. Just by knowing our time together is limited.

[CindyM]

we have had eighteen months in which our lives have been enriched in many ways. Just by knowing our time together is limited.

It is good to be reminded of this, Landscape. I have a bad feeling about these next few weeks. Partly because PALS sometimes give themselves permission to go after the Holdiays are over and partly because the long winter stretches ahead and that is daunting to very frail PALS. All of our forum families are in my thoughts tonight...Cindy

[Gina]

landscape....my husband is now taking his ativin at regular intervals and even though it makes him tired he seems so much more comfortable.As cindy says that a lot of people with als do try to make it through the hollidays and then give themselves permission to go. Jackiemax i can appreciate your concerns for people whom may not know when it is time to turn to the more potent drugs such as morphine and ativin.....at this time however my husband is suffering and trust me when i say it is a hard decision to make but a necessary one as well because those of us such as landscape and i just want to keep our loved ones comfortable when we know the end is near.Irma i personally hope that you will be on this forum for a long time you are so much help to me and i look forward to your input and guidance......gnight all and Again you are all in my thoughts and prayers.....GINA

[Icanmanz]

Hi Gina. I truly am feeling for you and your husband this very moment. May God give you the courage to be by your husband till the end. I know He will give you all the courage you need. Is it just you and your husband? Do you'll have any children at home?

Gina, I will remain on this forum for as long as they allow me to. LOL! I will be here for you. If there are times when we need to discuss something in private, we can PM each other. I don't mind at all sharing what I have experienced from my son's passing. He taught me so much. He will always be my "rock." May God bless you both. will keep you guys in my prayers.

Irma

[Gina]

Irma thank you so much you willl never know how much you have comforted me when i needed it.Yes i have three grown children none of which live at home but are very close and do help me a lot.I sent an sos email to my husbands familly for help.A lot of them have thier own problems but most have responded with eagerness to help.I guess i am a typical mother in that i want to protect my own kids from hurting but i realize now that i cannot and my heart just breaks for them.His mother whom is now 82 comes almost daily and we have grown closer but it breaks her heart to see her son suffer so....as im sure it was with you....i just wish i could protect her from that as well.!!!!They did not have a good relationship and now she is so wanting to help in every way and i am so gratefull that they finally can have this time to build on thier relationship!They both need it!! Thank you again you are such an important part of this forum and yes i will need your help and may p.m you when i need to talk about things that are hard to talk about on the forum........God Bless and hugs 4 u tonight!!!!

[Icanmanz]

Hi Gina! Just got on the forum. I was following up on other things on the net, and baking cookies,too. I burnt my first batch! LOL! I forgot I had them in the oven. It's okay, I threw the 1st batch away, and still wound up with a bunch! Then I got hungry fir fried cucumbers. I don't know why. I just wanted them! Isn't that crazy!

Yes Gina, anytime you want to ask me no matter what, go right ahead, and I will try to answer your questions. There is so much to this disease. I am glad that your family are there to help you. I pray to God your husband's mom will be strong enough to withstand all of this. May God bless your entire family.

Irma

[Al]

Ok Irma I have never heard of fried cucumbers. Now that sounds crazy. How do you cook them. We just eat them cold in salads.
AL.

[Icanmanz]

Hi, Al! Mmmmmh! Fried cucumbers! Okay, have you ever fried zuchinni (sp?)? If you have fried zuchinni, use the same recipe that you would for zuch! They come out perfect. I use the canned milk, 1 egg. Then you roll the cukes in flour, salt and pepper. Don't forget to peel, and slice the cukes!!LOL! Naw, I am just being silly! It is good eating!

Irma

[CindyM]

That does sound good, Irma. Glad Al asked the question - I'd never heard of it either but now am tempted to try! Gina is lucky to have found a friend in you! Cindy

[Thumbs Up]

My sister also held in till January 21, she did not want to leave us at xmas, her son was 12. This disease is cruel and relentless. Norma

[AngelManFL]

Irma, that does sound good!! the funniest thing is that one of workers just yesterday was telling us about fried PICKLES!! same recipe as Irma's but she uses all kinds of dill or sweet pickle wedges!!

I honestly think the cucumbers sounds alot more appetizing! :mrgreen:

[AngelManFL]

Gina - just also wanted to let you know I was still thinking of you and praying for your strength.... :oops:

[Icanmanz]

Hi Don! I pray to God you are doing a little better. Hey, let me tell you about this restaurant here in Houston, called The Red Onion, it serves mostly South American, not Mexican, but SA and Carribean food. They have the best, I love their food, and their Ritas!!!!! They have the best fried Plantains (sp?), they melt in your mouth. I make a pig out of myself every time I go there!

Don, I have read your posts, and I find myself wishing that I were close to you so I could pay you a little visit now and then. I want you to know that you are in my prayers, and I thank God for this forum. Isn't it great? Listen, you take care of yourself, and keep us posted. We care!!! May God bless you.

Irma

[Gina]

Thanks Don!wishing i lived where you live today....we are getting hit with one hell of a storm.I am so worried about the hydro going out.Glens needs for his machine.Suppose to stay off the roads!Got portable oxygen but not suppose to use when sleeping!.......Take care and send me some sun if you can and a little prayer that that dosnt happen.......Gina

[CindyM]

We are getting dumped on, too, Gina. My Aunt in Florida just sent us a Christmas card taken at the beach! She's in her jeans and sunglassses and looks like a youngish 80 year old movie star!

I hope your power holds. Best heat up some hot soup in case the ice gets to us! Cindy

[AngelManFL]

Gina,

If it helps at all it is supposed to 40 degrees tonight! but back to 75 - 80 by Wednesday! I'll pray for sunshine for all of you up there.

Cindy, I lived in Boston for 10 years - but have been back home in Florida for the past 11 years.. I moved back after 3 years of shoveling in a row!

Gina, I agree with Cindy - find a gas generator - the right one could help run heaters too..

I wish you all well through these storms and pray you keep your power on..

[Gina]

Hi Don!You really are an angelman!Thanks so much for your well wishes and support and i hope that your situation also is tolerable and you will find the strength to endure untill you can get your appt.I can almost feel the warmth of the sun coming my way from you????Cindy you got that soup on yet????.....Gina

[JACKIEMAX]

i'm the caregiver who wrote that our dr. will not prescribe ativan or morphine for my husband. his home health cnt who bathes him 3 xs a week told me recently he was 'in the last stages of his life', but what does that mean to you caregivers who say morphine and ativan help? what is your husband's status? is he on a bi-pap a lot? a trach/vent? can he still eat, and talk?

i lost a husband in 94 to acute lukemia, and altho he, himself, was a physician, he nor his other physician friends, let me know at the end that it was really the end, so i was in big-time denial when he actually died. they tho't they were all protecting me, but that's not true - i needed to know.

i just don't know what his 'last stages are', so please, any of you that can help me, i'll appreciate it. he can barely walk to the bathroom on his walker, and when he gets back to his rocking chair, he is soooo out of breath. he is on oxygen a lot, but his bi-pap more and more now. his breathing capacity is 50, and his anxiety level is off the roof.

i need your input. please.

jackiemax

[landscape]

Hello Jackiemax:
I'm certain that every individual is different. Here are the things that I noted in the two to three weeks before my husband's death. At this time he could still do a standing transfer from the manual wheelchair onto the bed/toilet but could no longer walk. He then became increasingly tired and was therefore spending more time in bed (with the Bipap on of course). He did not seem as alert, would spend ages just sitting at the table with his various drinks in front of him and looking out of the window. He was hardly eating anything at all and even liquids were not taken in great quantity. He no longer had the energy to have a bath (even with the use of a lift) and so I washed him either in the wheelchair or on the bed. He was using an external catheter. At this time he was not on morphine or Ativan.

He developed a urinary tract infection and this was the start of a rapid decline. Got him onto Cipro for the UTI but on the 4th day when I went to get him up in the morning and took off the Bipap he became acutely short of breath. I had to put it on again rapidly and from then on he needed the Bipap all the time. He could no longer do a standing transfer, I used the lift for all transfers.

The Palliative Care team came that morning (he did not want to go to hospital) and by the end of the day he was on liquid morphine (5ml q4h). He could no longer tolerate being washed at the sink and so I did bed baths from then on. Things got minimally better for four or five days and then there was another decline and he barely got out of bed after that.

What followed was shortness of breath even on the Bipap. We had some Ativan but he only took one and did not feel it helped him particularly. But he did not display much anxiety. His oxygen levels fell significantly but in a variable fashion (they monitored them very frequently) and he was put on supplementary oxygen, this did help. At this time he could still swallow, could still use his hands enough to write. I would take the Bipap off briefly, just enough to give him ice chips or to clean his mouth with a Toothette and Club Soda. In the two days before his death he could not speak and could not write but could gesture with his hands. He died eleven days after the Palliative Care team came in. He chose to be sedated and then have the Bipap removed. Four hours after the Bipap was removed he died so very peacefully.

It was an exhausting and draining time. I hope these comments help you. Wishing you comfort and strength, Jackiemax.

[swmn]

hi Landscape - just wanted to thank you for once again helping others - you have so much to share and we all are so glad you are here - So sorry for your loss. I've been praying for you and your family ... {{Holiday Hugs 4 U}}

[Gina]

Jackiemax,just read your post I must admit that i am very puzzled as to why your doc.will not perscribe ativin or morphine especially if as you say your husbands anxiety is through the roof.This just seems cruel to me and it sounds like he is at the stage that he needs these meds to keep him comfortable.My husbands g.p had no problem whatsoever perscribing something as i told her i thought that he was beginning to suffer.My husband also is on bipap and oxygen for the good part of the day.It is so very hard to predict when my husband or yours will pass and as landscape put it everyone is different.All that i know is that i just want to keep my husband comfortable as you do yours ...so unless they can give you a really good reason why he should not have something i would really insist on it!!!I am not a medical professional and dont claim to have any expertese in this area but dammit this disease is cruel enough without denying the patient at least some form of comfort in the meds that are available......God Bless you and try to stay strong.

[Gina]

Hi landscape so very glad that you have decided to come back.Again i am so sorry for your loss and appreciate that even at this most painfull time in your life you are still reaching out to help others.Thankyou and we look forward to hearing from you......prayers and hugs....Gina

[landscape]

Thanks so much for your condolences, I do appreciate them.
I should have said that I think age might make a difference. My husband, although he was extremely healthy and strong prior to diagnosis with ALS, was almost 80 when he died.

[JACKIEMAX]

hello again,

it is a monster, mean, disease - for all of us - the patients and the caregivers. my husband is becoming more anxious and the dr. is giving him buspar for it, 3xs a day. he says morphine and ativan could stop his breathing while asleep, so is not ready to let him have it at this time. ?????

he is no longer interested in opening mail, reading, or much of anything. he watches tv a lot, but is sooooo weary and tired.

i don't know how much longer he will be with us, but none of his family seem to think he or i need any help at all. they all occasionally call and say how is he, but no one offers to come and physically help out. this is just not acceptable, but would do no good to raise cain, they are not going to change.

thank all of you for the comfort you share with me.

jackiemax

[Gina]

Hi Jackiemax,my heart goes out to you.I know all too well how painfull and stressfull this damn cruel disease can be !Im so sorry that his familly is not thier to help you out.....Are they just in denial or incredibly insensitive????Sorry for being so blunt but i know and have had same experience with some familly members whom have reacted in the same fashion! Have you done any research on the effects of morphine for terminally ill patients??Please dont be offended im not trying to be pushy but it might put your mind at ease if you knew more about these meds in relationship to als. ..my husband takes ativin when he feels he needs it and it seems to help trememdously! I am not questioning your caretaking at all i know that you are doing a wonderfull job !!!You sound so very much alone with little emotional as well as physical support..please let this forum help you at least with the emotional part!Maybe some others on this forum can give you more suggestions as well.Unfortunately thier are so many agonizing decisions that we all have to make from time to time with caretaking i find it so helpfull to come here and get all the info i can before making a decision.............thinking of you and your husband Gina

[CindyM]

Hi Jackie- sorry to hear of your hubby's decline. Almost sounds like Hospice can help-if they make home visits in your area. They will do things to help make him feel better emotionally, and since they deal with end-of- life issues they can advise how to get the family more involved.

Sometimes family members think they will always have next month or the month after so they put off visiting.

In our area Hospice comes in for up to a year, and they are a big help but you have to get them involved early enough so they have enough time to get to know both of you.

[JACKIEMAX]

i have read all your posts and thank you all from the bottom of my heart. my husband's pc dr. suggested we go ahead and call in hospice and give up home health, but medicare will now allow hospice to come in until he is 'bedfast' and cannot feed himself. i think that's a disgrace, but he is close to that now i think.

as for his family, when he sits in his rocking chair with his oxygen/nose thing, he 'looks' pretty healthy , but his voice is soooo weak, and he can barely take a step alone. he has fallen three times.

they all live out of town, and refuse to accept he is dying. they accuse me of trying to isolate them from him bec. i wrote and told them he did not need the stress of a house full of company for sev. days now.

thanks for allowing me to vent. i sometimes feel i'm all alone in this, but i am a christian, and i know God will see me through this.

thank you all.

jackiemax

[Icanmanz]

Hi Jackiemax! So sorry to hear about your husband's decline. God bless you, I know what you are going through. Cannot think of the right words to be of some help. All I know is the our Father is there to help you through this, and when He is ready to take your husband home, He will embrace him and carry him home. He will be pain free, singing with the angels. Just keep talking to him, he'll want to hear your voice to the end. Even if he appears to slip in a deep sleep, but still breathing, keep talking to him, he will still be able to hear you, feel you, and even your scent will mean the world to him. God bless you both, jackie. Don't worry about the family, what they say, just concentrate on your husband, and let them talk. They'll tire sooner, or later.

I am not going to be home tonite. I am spending the night at my son's tonite. My husband will be on the computer, but he just plays games! Like a big kid!!! LOL

God bless. I will be praying for you guys. Be back tomorrow! Don't feel so all alone, we are here!

Irma

[CindyM]

Hi Jackie. You would think they would want to spread out their visits so they could get some "quality" time with him. I am sorry you are going through this. Everybody thinks of the patient and sometimes it is easy to overlook the caregiver. Cindy

[JACKIEMAX]

i, too, was told a year ago my husband might only have a few weeks and i
actually posted that on here. but now he is bedfast, i feed him his cereal, and
give him ensure w/ice cream in it and feed him some real food, but he has
little appetite. gina, try and calm down. you are doing the right things. it is
in God's hands. i have asked hospice to come every single day now and he
wears adult diapers and has lost all dignity having to be
changed' and taken complete care of now. he no longer reads the
newspaper or works suduko puzzles anymore. his bipap is set as highas it
will go/ plus oxygen, and i give him ativan and morphine on a nightly and sometimes
daily basis for his comfort and rest. i keep saying to myself 'i can't go through
this, but God promised never to forsake me and he will see me thorugh it.Horace
is a christian and i know he will go to a better place soon, but believe me, i
know and understand your pain. jackiemax

[CindyM]

I am thinking of you and Horace tonight, Jackie. This disease is sometimes very sad. I'm sending hugs your way...Cindy

[terri]

Hi,

You have come a long way in the past year, Jackiemax. I'll be praying for you and Horace.

terri