Hold on Tight...

You inspire me, girl. “To know the strength of your anchor, you have to meet the fury of the storm”. Your anchor is sufficient.

Well Roger I guess we all cope or blow away, and blowing away is just not an option.

The Hoyer problem is that due to a series of mistakes on the part of hospice we still need a lift. At present Brian is choosing to do everything, and I mean everything from the mega recliner. He allows the aid to manage be him to the shower chair now not me and she gives the showers. Me, I empty the cath bags and deal with what there is of the poop all from the recliner perspective.

He sleeps in that chair as it lays flat and at various stages of elevation.

I'm sorry Lenore - but you lost me on the Hoyer/lift problem. "Hoyer" is a generic term for a lift (I'm assuming you know that). So, what I'm reading here is that hospice just has not gotten any type of lift for you at all? If that is the case - that's horrible! I hope you have been a squeaky wheel with them (and squawk loudly if you have to) and tell them in no uncertain terms get us a lift NOW!! Sorry you are dealing with this needless, extra stress!

Greetings to the tribe.

Got the lift going today! The one we had in the house was supposedly dead but not really. No one had bothered to figure it out with us. So now, a real electric ( not manual! ) lift.

I was ready to rent one on my own. I want to encourage Brian to spend some time in the bed not just the recliner.

I’m weary from working budgets all day at work, doing a morning and and evening poop clean up , messing with the lift...

Before anyone cries me a river though, someone was cleaning my house and getting Brian his liquid lunch while I was away. CALS at home all day don’t have it easy than those of us working at jobs- they may have it harder. If I took care of Brian all day every day for months and years, I’d really be strung out and that’s just the truth, like it or not.

It’s a beautiful night. I’d give anything I have to be on a deck having a drink with Brian rather than sitting on the couch waiting for 9:00 pm so I can settle him in and go upstairs, relieved his diaper is clean for the moment. Yet I am glad it’s a beautiful evening. I’m glad I have gotten to spend all this time with a wonderful man.

Does he have a power chair that he could spend time in to get around the house or outside?

I'm glad to hear you have a functional lift! YEA!! Wooo-WHOO for small victories, huh? I'm glad you have had help today at home, and yes - when I virtually quit work (worked only one day per month) I felt that my paid job (where I transfer-lift-walk-exercise patients) was easier than my job at home as a CALS. Part of that feeling was definitely emotional. At work, even my 90-something patients have potential to get better; hence their admission to a rehab. hospital. At home I was dealing with a very similar situation as you are; Dave preferred to stay in his recliner most of the time, mainly because it supported his shoulders and neck better.

Now that you have a power-lift available, I am also wondering, does Brian have a power chair? Even if you need to steer it, you could possibly take Brian out on the deck, etc. with you? Lenore, you seem to be a "glass half full" type of person, i.e., you seem to always see the bright side or silver lining (enough metaphors!!). I admire that greatly! So wonderful for you to still see & feel the beauty all around you in a beautiful evening. I too am glad you have gotten to spend time with your wonderful man. He is lucky to have you as his CALS!

Thank you both.

Brian opts not to leave the house, and refused a power chair. He actually sent a power chair back that was a loaner to the ALS Society.

He said it had nothing to do with depression, etc he was just done with being out and felt much more comfortable at home. That was last fall, with a final decision on that front this past winter.

Brian talked about the people who looked at him when he was out, and the physical discomforts of being out of the house. He not only refused the power chair, but refused to let me do a modification. On the side door of our house to make the three steps accessible. That was after he did let me get a ramp for the outside steps.

Unable to dissuade him, I have rolled with his wishes.

Lenore I am so sorry Brian won’t even consider the deck, but I do understand. My Brian has rarely been even on the deck these past several years. I am so thankful you have this time with him, even if it has to be in the house vs. the deck.

You are constantly in my thoughts.

Hugs

I’m sorry to hear that too. My husband was in the same boat last fall, but when he finally agreed to a power chair it made him a lot more independent, which was definitely easier on me too.

I too am sorry Brian opted out of the power chair. When my husband finally agreed to one, it was tough to get him out of the house at first. I told him - the more people see you out in the chair, the more comfortable they will be. And they were. Many people just don't know how to react at first. Once they see that the person is still the same, things become more normal.

It probably helped that our son was in his senior year of high school and hubby wanted to be at his games. All the dads would actually gather round him at the games. He could be just "one of the guys" again. It was great!

Oh, man Lenore - I'm so sorry! I can understand Brian's comfort level (both physical and emotional) being better at home; Dave was always more comfortable at home too, but he wanted to continue to be out in the world & see/do things. It became my mission of sorts, to get Dave out everywhere - highly visible places ...... restaurants, bars, movies, cruiseships, etc., because it was my way to increase ALS awareness. Small measure maybe, but my belief/faith in others was reaffirmed thru these experiences. Almost everyone we met was so kind, supportive, & caring. I had a woman come up to me on a cruise and say that she too had a friend who had had ALS. She said to me "you'll never regret what you are doing for your husband".

I respect that you respect Brian's wishes. However, would he continue to feel this way (wanting to stay permanently in his recliner or bed) if he knew it was making things more difficult for you (..... trying to change pants/Attends, in a recliner chair, etc. is tough - been there/done that)?

Again, so sorry Lenore. I wish Brian would allow some measure of happiness in his life and be able to watch a sunset with you.

Brian has made a series of choices along the way based on the thought that he has never wanted to be around long as a disabled person or see ALS anywhere near through to a natural end.

Now with the Gapapentin (for Neuropathy), the Lorazapam(for sleep, anxiety, restlessness...) he started this week and the Morphine he was already using he really feels checked out.

Butt pain from the bowel issues (which are being treated with large doses of Senna and daily Miralax) and the foot pain from the Neuropathy, along with the bowel issues themselves and just even having an indwelling cathader have been game changers for sure. We took another step closer to the end this past week in a big way.

I think a big difference between Brian and some PALS is that while others have sought ways to learn be with disability, Brian was thinking on Veritas in Switzerland Versus VSED at home. His attitude from the day of diagnosis was that he would hang out for only so long.

I am not criticizing that, and I have not encouraged or discouraged it except to remind him that he was never a burden to me and I would do anything legal that he wished. I really have given myself to his choices in this situation.

I shared opinions along the way, like morphine getting started too soon, like wanting him to have a power chair, like thinking maybe Hospice involvement was actually hastening his demise. They come in with their medications and Medicare won’t pay for Rilutek Any longer and the nurse says it’s pointless to keep taking vitamins. A POLST is on the fridge, and it’s DNR/DNI. The game changes.

I figure Brian won’t opt for VSED until the November elections, but he may well at this rate right after.

We actually had a good first year, he progressed slowly. Then Rilutek and appendicitis and the hospital changed a lot, but still the time before Hospice came in felt like the end might be a ways off. Then Hospice, lots of help but a clear change in tone. Now all of this.

I honestly think the bowel and bladder issues were likely caused by Morphine not ALS, but no matter because the Morphine stays. I don’t even know what to say on all that Neuropathy in his feet, first just the left and now the right. What a wretched disease. At least he still cares about politics when he is awake.

Lenore, this is so much to feel and deal with. Big hug coming your way.
We're having a string of heartwretching goodbyes this week.

Rights and wrongs mean so little now don't they Lenore?
About the only real 'right' is to stand by your PALS choices, whatever they are.

My Chris made a string of choices I would never have made, but I have never once regretted respecting his right to be an adult and make his own choices. It's not like if only he had made the right choices he would have been cured after all.

hold on tight indeed xx

I count myself lucky (VERY lucky) that Dave allowed me to be his advocate, his "voice", in making many decisions. He trusted me to help him live as best he could, but he also knew that I would find a way to take him out of this world if need be, and to end unnecessary suffering. I may have failed at that last point (something I still struggle with), as I think Dave had 10-15 min. of suffering at the end (severe air hunger/suffocation). I beat myself up at least once per day over that one ........

Anyway, since I have been in the healthcare field for many years, and Dave was o.k. with letting me deal with whatever as long as I could/would, he was also o.k. in me making many of his medical choices. I would never have forced my opinions/options on him - but Dave was a mellow guy and trusted me with these decisions. I know he felt well taken care of and I tried to make life interesting for him .......... but, in the end, like Tillie says, you need to (& I would have) honor your PALS decisions as an adult. It sounds like your Brian made his decision at diagnosis to end this as quickly as possible. You are honoring that ........ & I wish you so much love and support to the end.

This is a BEEOTCH of a disease, huh?!