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michfox

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Hi. My first post. My Dad was diagnosed first with PLS in 1987 (age 44), then with ALS in 1994. We have fought a long, hard battle for the past 20 years, and I think it is nearing the end. His has been slow-moving all these years, and since January has begun to decline very quickly. Dad is pretty much paralyzed, has had a peg tube since 2003, but has not had to use any bi-pap or vents. His respiratory is still okay, although I think his breathing has become shallow, and we have been using oxygen lately. Also, he is less alert, and seems to spend more and more time "somewhere else", not able to focus on anything happening here for too long. He did just get over a bout with pneumonia, which we didn't expect him to be able to fight off, so he obviously hasn't quit fighting yet! We do have hospice coming in now, and that has been a big help. We are grateful for all of these years we've had with him, especially as it seems most ALS victims go very fast. It's hard to actually believe this may be "IT".

My question is if anyone else has experience with mini-strokes? If we get him upright for anything, especially the toilet, he faints, and last week we think he had a mini-stroke (TIA) which affected his eye and mouth for about 24 hours, then went back to normal. The bloodflow is not getting to the brain, and I'm wondering if after all these years the ALS is finally affecting his heart as well? Also probably the lack of oxygen due to his shallow breathing... we don't think he would tolerate a bi-pap at this point, because he can't really move at all. He is also not sleeping at night, which means Mom is not sleeping, and it is affecting her ability to function and care for him during the day. He is on methadone and trillisate for pain, but has anyone had any luck with any sleeping medications? He is pretty sensitive to such things, but at this point we're willing to try anything.

I guess I've also been searching for others' experiences with the actual dying process of ALS, so we might know a little more what to expect, and to prepare ourselves? I did find some info from the hospice websites, but I'm interested in actual experiences. I know every individual case is very different, and it is hard to make generalizations, or even guess as to a time frame, but any input would be appreciated! You'd think we'd know everything there is to know by now, but we have been fortunate, that the "end stuff" was so long in coming. Thanks so much!
 

Rhonda

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So sorry to hear about your dad. I take 5mg. of Ambien before I go to bed it gives me
7-8 hrs. of sleep and I feel fine after waking up, no side effects. I hope this helps with the sleep problems. Take care, Rhonda
 

Al

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Hi michfox. Sorry about your dads decline. Most sleeping meds will decrease breathing in someone with shallow breathing to start with. An anti anxiety med might help and not affect his breathing. If he is lying down most of the time, when you get him up it may help to do it slower to let the blood flow catch up. Other than a reference to a Hospice site that deals with end of life I'm sorry I can't help with your other questions. Possibly someone else has some insight. Welcome to the forum and hope we can help. AL.
 

hboyajian

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Mitch, I know how painful it is to watch the decline in someone you love so much. I don't know about strokes, although I know my father's brain function was affected in some ways that made me wonder if something else had happened along with the ALS. If you are concerned about it, maybe it would be worth having evaluations done for it. How is your dad communicating ? If he has had small strokes, it could become more difficult for him to express his thoughts verbally even if his cognitive function is still fine. If he is having increasing difficulty, I think it is important to ask him questions about his desires regarding medical decisions and end of life issues. I know it is extremely hard to talk about these things, though your family has had extensive experience dealing with this illness for so many years.
I think the process of dying is probably as different for each person with ALS as the expression of the disease is variable. However, there are most likely similarities as well. My father passed away from ALS last December. I will try to tell you something about the experience in a later post. I don't know how much of it I will be able to get through.
 

michfox

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thanks for your support

Hi, thanks for your support. I understand if you just can't go there right now - I'm sure the pain & loss are still very fresh. Dad is wanting to stay in bed longer and longer now, he is just getting so weak. He is able to talk very little - and I do think it has affected his thought processes, and his alertness. He seems so "out of it" a lot of the time. It's hard to know... how long? Should my Mom take a leave of absence from work so she can just spend time with him? Is it time for me to just put everything on hold and go to him as much as I can? Should my brother & sister fly in from out of state to say goodbye? I just wish we knew. Anyway, thanks for the reply, and I will pray for Our Lord's comfort & consolations for you! And Al, thanks for your reply - the Dr. did prescribe an anti-depressant, so we'll see if that helps.

Michelle
 

Jane

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hello Mitch. I am sorry your Father is having such trouble. I lost my sister almost 1 year ago. It is so hard to watch.
Sis was bed ridden for about 8 months before her death. She used a peg tube and could no longer use a communication device so we just used an alphabet board and a picture board.
Each persons passing is different and it is something that we all worry about for our loved ones facing this disease.
Sis used several meds that helped her cope with shortness of breath by calming her. When the end was near (about the last 2-3 days) we had available high power meds that allowed her to sleep thru the increased breathing problems. We continued to feed her and hydrate her but in the end there was just not enough breathing ability left to support her. While she was able she discussed with her visiting nurses and I who would make the decisions regarding the use of the powerful meds when she was not able to. She was asked to consider this question several times over the last months and each time she gave the same answer, she wanted us to decide for her.
With her instructions in place we were able to keep her absolutely comfortable and she passed very peacefully in her sleep with all the family there for her.
My fears of choking and gasping turned out to be groundless.
I will be forever grateful to the paliative care dr. who came and helped her and us through this terrible time.
I pray that your family will be blessed with this peaceful passing for Your Dad when the time comes. In the meantime I will pray for all of you.

take care

Jane
 

hboyajian

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Hi Michelle, (sorry about calling you Mitch earlier, oops), I really understand your concerns about wanting the family to be able to spend time with your dad before he is gone and to have a chance to say goodbye. If anyone in your family feels that they would be upset not to see him again, I think YES THEY SHOULD COME NOW. While he could be around for quite some time, it is also possible that he could go much sooner. When my father reached the point of mentally checking out and being less able to focus on the present moment, he was only with us for 2 more weeks. This may be completely different in your case. It is hard to know what to do, especially if taking time off now means that you can't do so later when maybe he needs you even more. That was my dilemma. I was trying to get a few days to a week off work each month, and didn't go to him the week before he died because I was saving up for January and thought I'd have Christmastime with him. My brother, who lives in a different state, did have a chance to visit with my dad the previous month and I know this is of great significance and comfort to him. The week I spent with Dad 2 months before his passing, and the weekends I had with him are precious to me, but I still torture myself that I went Christmas shopping on the day he went into a breathing crisis instead of being able to tell the future. Holly
 

midwestgirl

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Holly, do NOT feel guilty for not being with your father when he passed. I am certain he knows how much you loved him, and wanted to be with him. I am facing much the same situation. I just spent two weeks with my mom, and could see a decline which is always scary, because we just really never know what the future holds. I was discussing with my husband this morning if I should go and spend a couple months this summer with mom. Or, should I wait until things become more critical? Very heart wretching decisions. The sad truth is that when a loved one passes, we just wish the world would stop, but it doesn't. Life goes on, and your father would want you to be happy.
 

hboyajian

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Midwestgirl, Thank you so much for your kind words. You are entirely right about the people we have loved wanting us to be happy. I have had a few moments of contentment since my dad's passing, especially at times like watching my mom ride around on the recumbent tricycle she just bought. She is part of an old ladies trike club...very good that she is making new friends and getting out.
I have had a tough time with overwhelming grief though, and have just started counseling. What came out of this is that I wanted so badly (irrationally) to save his life, and this was just not possible. I actually was there at the time he died, but only because he was put on temporary ventilation. I know rationally it would have made little or no difference had I been there earlier in the day. I wouldn't have known any more than my mom did that he was about to lose consciousness from CO2 build-up. I have to accept the fact that the bi-pap machine just didn't work for him. The pulmonologist suggested it was something about the physical structure of his wind pipe, and there is nothing I could have done to change that.
If you can, go spend some time this summer with your mom. I'm sure it will mean so much to her and to you. The memories will help sustain both you and her when things get yet more difficult.
 

hboyajian

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Michelle, the moment of my dad's passing was peaceful and he suffered no pain upon dying. He lost consciousness again about 11 hours prior to his death and gradually his breathing became weaker and slowed, as did his heartbeat. He was on only oxygen at that time, though he had been on temporary ventilation (intubation) for 2 days before he made the decision to remove it and be allowed to die naturally. He received pain medication during the time he was intubated, because that is quite painful on the throat. However, he wanted to be alert enough to communicate with us and asked not to be medicated part of the time. When he came off the ventilator, he was conscious and lucid for about 4 hours, though I could see he struggled to speak and stay mentally present.
After about 4 hours of alertness and true communication, dad gradually lost rationality though he was still able to speak and was still conscious. This was something I was not prepared for and had either not read about or didn't quite understand in the death and dying pamphlets I had read. He repeated himself continually about mundane things and later became almost angry and then disconsolate when we could not comply with all of his requests. It was extremely hard to hear him repeatedly tell us he wanted his walker when he was really too weak to get up. It was as though he had blocked out the fact that he was dying and his will keep going was so strong that this part of his brain could not let go. It was both a relief and emotionally wrenching when he lost consciousness again and we knew he was approaching his last moments with us.
This isn't in chronological order, and I hope it it understandable and helpful to anyone to read.
 

michfox

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Thanks for sharing

Holly,

Thanks for your reply, and for the information. I just feel like if I can hear as many other people's experiences as possible, some things will be the same, and might look familiar when the time comes. I am so sorry for your loss; I can really relate because my Dad and I have always been close. He is so restless right now, the past three nights has not slept at night, nor during the day. He falls alseep for 5 minutes at a time and wakes up feeling like hours have passed. Mom is at her wits end - hospice is going to try to get some volunteers to sit with him through the night so she can get some sleep. I have 6 children (the youngest is 9 months) and I live 30 minutes away, so I can't help with the nights. I keep fluctuating between wanting it to all be over because the caregiving is so difficult, and then when he starts to decline again, I think, "O God, I'm not ready for him to go." He ran a fever for no reason Friday night, not high, and then it just went away after two doses of tylenol. I know this is not a good sign. He is quite confused and dreams a lot - this is probably the pain medicine - trillisate and methadone.

Our faith and many people's prayers are sustaining us. My brother and sister are coming in from out of state next week to spend some time with him. This will be a good time for our family to be together and share the burden. Anyway, thanks, everyone, for your input. May God bless all of you!

Michelle
 

hboyajian

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Michelle, I am so glad your family will be having this time to be together and care for your father as well as each other. That is so important and will bring you all closer.
One thing that helped us share memories was looking at photograph albums together. The kids picked out pictures they liked and took them out of the album for us to hold so Dad could see them. I could tell this mattered a lot to him from the expressions on his face, even though he could not speak at that time because he was on the ventilator.
You and your family are in my thoughts and prayers.
 

CindyM

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Hi Holly. That sounds like such a caring and supportive thing to do. I bet the entire family appreciated it. We will be facing my Mom's situation soon, maybe within the next few months as she is in the final stages of Alzheimer's. Right now I sit with her and sing old songs that she used to love, but more and more she stays asleep because she is so weak. You painted such a nice picture of your family! You are lucky you have each other! Cindy
 

hboyajian

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Dear Cindi, I have been thinking about you and your mom. This must be so hard for you to see your mother decline and know she will be gone soon in the future. Singing is a powerful and beautiful thing to do for her. I'm sure that when she is resting, or even sleeping, the love and emotion of the songs reach her in the deepest way.
Holly
 
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