CALS Roll Call Continued

[Mary2]

I think the aides you have now will probably work out fine and they will know your FIL as he passes through the various phases of the illness. When I think of hospice, I think of morphine. LGelb might have more to say about morphine. It does ease breathing. My PALS used it several times a week for about 7 months before requiring it more frequently. You don't need hospice to get a morphine prescription. The VA doctors might provide it. The hospice does have someone on call 24 hours a day so if you needed to increase the morphine quickly you would be able to call someone to discuss doing this. That would be an advantage of hospice.

 

[Tomswife]

We are using hospice at home. We are using a hospice affiliated with a large NJ hospital. The benefits are: an aide comes mon-fri to bathe Tom in bed and change linens when needed; the aide helps me prevent bed sores; the nurse came 3 times a week and is now every day; the nurses are on call 24 x 7 and that is helpful since issues tend to arise at night; hospice develops a plan of care with various meds (morphine comes later) that change over time as PALS needs change; all meds are delivered to the home same day; hospice provides and orders many supplies, eg blue chux, barrier cream, etc.; a LCSW is assigned to help us through this time with visits and phone chat.
All of these services are very beneficial. PALS is very heavy and the aide can help me move him in bed to keep him clean and rotated. The on call nurses have been very supportive - and there were recent days when I called 5 times and they came to the house twice in one day.
I dont feel alone caring for him.

 

[lgelb]

Andrew, if he has aides he likes, there is no need to switch them out for "hospice aides" who are usually best trained in the "sedated cancer patient in pain" mode.

My husband never went on hospice. It's a fairly common choice.

 

[Tomswife]

Clarifying...I have had paid aides here every day during hospice. The hospice aides purpose is bathing and skin care.
I just this week released the paid aides because they are no longer needed.
Rationale for hospice- our physicians would no longer prescribe rx without seeing Tom, and he was too weak to go out, hence hospice.

 

[lgelb]

With the appropriate use/settings of BiPAP (+oscillation/assisted cough machine/suction for those who benefit), the air hunger that most often prompts morphine can be postponed till the end. And most PALS do not have the kind of pain that demands opioids. Still, some PALS do better with smaller doses early on.

You don't have to stick with clinicians or clinics that are not flexible enough to meet your needs, so if you're doing DIY hospice, best to identify your best resources early. Ironically, ALS clinics and hospices can be the least flexible, because they are more likely to have commoditized this -- so show up at your PCP from time to time, or find a home visit proxy, if you have doubts or have peeled off.

Larry's last PCP visit (we had stopped going to clinic the year before) was months before he began experiencing air hunger. He was naïve to morphine up to that point. When the time came, I portaled the PCP for a script. Larry directed his own death the following week.

Recognizing the beginning of the end makes it easier to begin the goodbyes and notifications for any last-minute visitors so when it's the end of the end, consciousness is no longer the goal, and you don't have to measure anything any more.

So hospice should not be needed just to increase the dose. I made it clear that this was the end, and we had all we needed. Certainly the culture differs among states and countries, but again, if your current docs aren't with the program, you're not married to them.

Apropos of nothing Andrew, if your cousin wasn't a smoker or an uncontrolled hypertensive, his family should be screened for connective tissue disorders.

 

[MJT]

I love this thread because CALS must learn the myriad options at the end. Having recently lost a parent in hospice care, I know the hospice experience can go poorly. However, the hospice team we have in place now shares our values and understands the needs unique to ALS patients. I could do it all myself, but what a gift to be enveloped by support. And yes, Laurie, recognizing the beginning of the end softens the edges.

I hope every PALS and CALS discovers the best ending for them.

 

[Narrowminded]

Lenore,

I missed your post in April. I so hope you are able to be with D more. I had thought you talked about moving, but I guess not. Do take care and don't be a stranger.

Hugs

 

[Marnes77]

How are people doing? I feel so depressed. Have had to take some time off work to cope with the burden and stress of fulltime work, caring and solo parenting a young child between two homes.

I feel I have developed clinical depression over the past 7 months since my PALs DX. Can barely move. Not much use as a parent or carer or anything. Can't even leave the house. Triggers everywhere. Happy families. Couples enjoying each other. Friends talking about holidays (we were supposed to be away on a gorgeous holiday with my child now but had to cancel - one of many losses. Loss after loss).

Not sure I can ever recover from the cruelty of this blow and the stress of managing so much. Not even sure I can go back to work. But then who pays the bills? I have to go back. Yet feel unable.

And we are only 7 months in. This could go on for at least twice that. I am getting weaker, not stronger.

Going to my pcp next week.

Not even sure why I am posting. Just venting really.

 

[Mary2]

Hi Marnes, I feel for you and your situation. I hope you have considered medication. I did and it was helpful. I also found that I wasn't going out because I hadn't showered or my hair wasn't right. After a while I just began putting on fresh clothes after doing a fast wash at the sink. Sometimes I wore a ball cap to cover my hair. This worked out okay. Sometimes friends will emphasize self care and they mean well by this but frankly caring for someone with ALS is all about pacing. In the early days going out of the house for self care might be something you can do. But as the caregiving progresses going out of the house might be too much as you try to conserve energy and self care will be the smaller things that you can do in the house. I am sorry about the triggers with the happy families and people going on vacation. That never quite goes away. I had food delivered. Expensive, but I found this helpful.

 

[Mana]

Welcome. I’m so glad you vented here, Marnes. This is a safe non judgmental place and has been a comfort to me since my husband’s diagnosis. Everyone has their own ALS story, but we do understand some of each other’s struggles, better than most of our close friends and family. someone called this a club that no one wants to join. I am taking an anti depressant and finally found a good therapist. She has described my experience as watching the love of my life be tortured every day and my response to that as normal. It helps to feel my grief deeply; then put myself back together as a functioning caretaker.
Mana

 

[Doing My Best]

Hey fellow CALS - just want to check in and see how everyone's doing. Unfortunately a number of people have become Past CALS in the last few months and I miss their wisdom and sharing, but for those of you still managing the day to day, I'd love to hear from you.

Marnes, have you gotten any relief from your depression or the other major stressors in your life? I have been struggling with depression myself, as time marches on (3 1/2 years now) and progression marches on and life keeps getting more complicated. I'm on an antidepressant and I do self-care stuff like meditation and exercise more or less regularly, but I think sadness and some degree of depression is probably inevitable in the reality we are living. Just have to work on keeping it to a level that's not overwhelming.

For the past several weeks our life has been dominated by urination. PALS has been using an external condom catheter, but has had myriad problems. One brand slips off, another gives him a painful sore - at which point we couldn't use a condom catheter at all and I had to resort to running to him with a urinal every time he needed to pee, which was never with more than about 2 seconds notice. And of course hydration is important for wound healing, and just in general, so it was a very frequent occasion. Many Chucks pads were used, many outfits and beds were changed. Very depressing for him, very stressful for me (and depressing too).

One lighter note: we decided to go to the symphony at a beautiful outdoor venue in the midst of this saga, so I fit a urinal under his pants and put a blanket on his lap. Late in the evening he said he had to go, and in the dark under the blanket I managed to hold the urinal in place, then extricate it from his pants, put it under my shawl, and carry it to the bathroom to empty. Total success, nobody the wiser. We had so many laughs about that it made the evening even more fun. (Not that I'm dying to do it again.)

His wound has healed, and we just got a new brand and size of condom and new catheter bags which all seem better designed and higher quality, but in 2 weeks if those haven't been a perfect solution he will be getting an indwelling catheter. This is something he's dreaded because he had a very painful experience with a poorly placed catheter post-surgery a few years ago, but it sounds like it will improve his quality of life. So one way or the other I'm optimistic the current chapter of the urination saga is drawing to a close.

Hope you are all hanging in there - sending best wishes for peace and joy wherever you may find them.

 

[SeaGunny]

My PALS sisters came out and told stories from days long past. They got my PALS to have a few belly laughs. Try to stay connected with humor.

While I am not on any drugs (much to the dismay of my doctor), PALS is to a certain extent. My "therapy" are those with commonality to my work force history. One time, a visiting nurse came down to check out my PALS. Seems she was from a town where I spent many a day off and on growing up. I named the house address, street. city, county - she was a bit surprised.

God Bless you all, stay safe, sane, keep the faith, take life with as much humor as you can get.

 

[Doing My Best]

SeaGunny, so true, sense of humor is essential. My PALS and I are amazed at some of the things we laugh at - but ya gotta, don't you!?!

 

[MarineGuy]

So true - need to laugh and find a way to cope with this every day as a support system.

 

[Mana]

Thank you, San Diego! So glad you got to that concert and made the urinal work. You’re an inspiration to me. (Also on antidepressant + therapist)