SeaGunny’s wife

[SeaGunny]

My PALS had Bulgar ALS - diagnosed January 2021 if I recall correctly. As the sole caregiver, I was wrung out! I finally sourced some funds and paid one of those medical wannabees to come change her clothes in the evening, then put her to bed after I had given her the last meds of the day, then wake her or help her change back into day clothes before they left at 0800 (8 AM)- This is not a cheap proposition. This cost me twice plus of what I made in a month. Still, certain articles of her needs still needed to be bought. Night help came at 10:00 PM. If I had not done this my Anger trigger would have been on a hair trigger.

As time went on, "we will show you how to do this" became more like a threat to me. I was already hydrating her after she awoke up right after potty. In addition I was supposed to exercise her which would have required over another 3 hours of my time. I started prepping feeding for next feeding right then and there, then about an hour and a half, I went to hydrating her.

I might be called to take her around the house, outside or read to her. I also might be called to put her in her Power chair, then line up / set her eye gaze machine (this could easily take 45 minutes to an hour). Sometimes I had to struggle through a doctor's appointment with her. This involved loading the car up with all her "782 gear" ( this is a dated term) which included 2 suction machines, the Trilogy. a feeding kit, her hospital bag, purse and docs, a supply bag. Did I mention one of her IPADs /plus phone bag, Even a bag for supplies that we might need. throughout our visit.

At present, I must have 60 days of unanswered mail. She fought with losing her limited abilities as well as a few close friends. She had lost the use of her right hand and arm, could not speak, spit, swallow or even blow her nose. She was losing strength in her left arm and both legs. To "get some help" we opted for Hospice that followed the Doctor treating her for ALS.

To that end, we had a Nurse, drugs delivered to the door and a Chaplain (I actually liked the last one we had) however, Bath Tech went on vacation, Chaplain went on some kind of ???? and was out of touch, nurse couldn't make it or they could not reach them, PALS and I both caught Covid, our night sitter was then off. I think I felt somewhat abandoned - much like Maui when FEMA went to take classes to respond to the very thing they had trained to help prevent and or respnd to. And when they (Carettakers) came back it was at an overtime rate. So, just as we were coming out of this, PALS started having more small issues. I called for the nurse as I had questions. I never did get a response, and PALS and I seemed to be recovering from Covid.

Next morning, PALS was resting giving me time to go do my daily ritual, and start setting up for wake up, toilet, hydration and feeding. Our daughter called to ask if the nurse had seen her in the last 24 hours. So that call went out again. around 10:30 AM with the response "I will be right out." PALS was still sleeping so I snuck in a quick break. Time on deck was just past 11. At 11 plus, I tried to wake PALS. PALS did not respond. Her night mask over the eyes was cold and wet so I removed that. I then removed her Trilogy mask. She did not respond. She seemed to be breathing (faintly), Still, she did not stir from her sleep. So, I took another "break" looking for the nurse to arrive. Pushing past 12, nurse finaly arrived and PALS was not responding to more gentle shakes to what was a normal. wake up call. Pulse / heart beat was check with negative results. PALS had passed away - 15 November 2023.

 

[Nikki J]

I am so sorry. You both had a hard journey and you were a stalwart care partner. Wishing you peace

 

[rmt]

I am so sorry. You were an amazing caregiver and partner. Sending you strength and comfort.

 

[lgelb]

I am sorry you could not keep all the hands on deck that you wanted, SeaGunny. But yours were the ones that mattered to her.

Peace and strength to you.

 

[Tomswife]

My heart goes out to you. Your journey was very difficult. I hope you know your loving care gave her great comfort every day. You were there for her thinking, planning, doing all for her. You showed such great love and courage. She is at peace now resting in the arms of the Lord. I hope you have family and friends who will support you at this impossible time. Peace.

 

[Mary2]

SeaGunny Peace to you and your family. May you find solace in the many happy memories you shared as a couple.

 

[SeaGunny]

I want to thank you all with a special call out to Mary2 & Tomswife for reaching out as they did in special offline contacts.

Really folks - Facebook has banned me twice just trying to join. Zoom was my wife's way of staying in contact with her family - and I struggled with that a lot! My hearing aide are failing and I can barely hear anyone on the phone or in person. I also HATE computers and at the bottom of my list is IPads (really hate those things) and my wife had two of them) plus I hate passwords!

First off I am a multiple service veteran. I realize that I am depressed (and have been for several years) and I also realize I am in mourning. I also have a bunch of daily stuff to do. So much to do that I am finding it hard to plan on visiting a brother 8 hours away by car. I no longer have an "body clock", I have no appetite - save for hunger pains, have lost the sense of the day of the week. I struggle with each day to TRY and get something worthwhile accomplished. THAT is what is bringing me out of my depression and helping me get back on an "even keel".
What I do see coming out of this is I am now an ALS support advocate. I am not sure what I can do but what I hope to impact is the support provided to a CALS / PALS situation. I met my wife at the USO. This seems to be a charity she endeavored to support as to the number of donations solicited to her. However, my main goal is to show that the real support is just not there. Yes some "toys" really help but also some of these gadgets can also bring more physical work for the CALS who is not on the patient list of the doctors who treat the PALS. This is a serious shortfall. If I do this - and I will - it will be the intent to bring greater, better care both mental, physical needs of both the CALS and PALS still suffering to bring up the quality of the PALS support.

See what I mean - I no longer have a body clock? I have written this any number of times, trimmed out most of what I typed (at 20 WPM) and re-typed it - several times!. It is pushing 3:30!

 

[Doing My Best]

SeaGunny, I'm so sorry. CALS do need a lot of support and when the people you're relying on don't come through for you, as in your story, it's devastating. You gave your all to take care of your wife and I think it's wonderful that you are going to advocate to help other PALS and CALS get the support they need. But before you launch on that mission I hope you'll take the time to rest and heal and allow yourself to grieve and adjust. Take good care - sending hugs.

 

[SeaGunny]

Thanks for the hugs. I can use all that I can get Doing My Best. FYI, my oldest daughter live in San Diego. Small world huh?

I did get out today and made a grocery store run - not sure why, - Oh - bananas - along with berries for my cereal. That got me to stop being such a grinch so I got some Christmas wreaths and some Poinsetias - those red flowers (leafs actually) and set all this up on the front of the house, I did get some eggs - a dozen because I did not know it was OK to break off half of the carton, got some cheese and some onion - forgot the Pico Degio (SP?) that chopped up onions, tomatoes and some kind of green leafy parsley looking stuff to make a breakfast.

at present, my body clock is way off and I do well to get one or 3 tasks done in a day. Like I said, I have no appetite - only a stomach that growls telling me I need to feed it. I am glad I was raised as a "Latch Key Kid". Otherwise, my solitude were mess me up. I even dislike answering the phones.

 

[Doing My Best]

Sea Gunny, that's Pico de Gallo that you want! Glad you're doing some decorating. I have various kids and family coming so I am trying to make it festive, but when I put on some Christmas music while I was decorating the tree, it made me burst into tears. That line "someday soon, we all will to be together..." - just did me in.

Since you say you know you're depressed, I hope you'll look into getting care for that. It can be made much better with both meds and therapy, and I know for me they have both been important. I'm still sad, that's inevitable, but maybe it's a little less crippling than it would be otherwise. Take good care of yourself!

 

[Narrowminded]

SeaGunny I didn't get to know you before, as I only visit this forum on occasion now. I lost my DH 5 years ago and I still have time that set me off. We suffered much of what you did with help. My DH's journey was 14 years long, 8 of those with a trach and vent. Because of that I totally get the depression and zero body clock.

I am going to reiterate Doing My Best and suggest you reach out for counseling. It was the best thing that I did for myself. And if you do not seem to connect with the first person, try someone else. When you hit the right match, you'll know it and it will be really great help. I also took meds for a year or so, also a huge help.

Do give yourself time to grieve and heal. Everyone has their own path with that, much the same as each PALS does. There is no right or wrong way to grieve.

I'm sorry you have to go through this. Please know you meant the world to your wife and that you were an amazing caregiver to her. You are in my thoughts and prayers.

Sending huge hugs your way.

 

[julianuccikelly]

@SeaGunny Checking on you today. My sister was a longtime caregiver and went through a tough time grieving. Take it one day at a time and know that you can return here for support -- we're here. You're not alone. I hope you're finding time to rest and figure out some way to begin keeping time again. Your military training may help the clock kick in -- or not. Just know you're surrounded by care.

 

[SeaGunny]

I got to tell you folks that I am recovering a bit. Rather than some shrink, I called an old Marine buddy that I was forbidden to talk to by my PALS due to the fact my wife (PALS) was his ex-wifes friend ~ at her request. Since she passed and my wife passed, what he did for us was to much to let a friendship go down the drain, I renewed or friendship and he and I can talk for hours about the old days, Since I got into genealogy, I have found cousins. One did a similar job that I did for the Air Force. We both attended the same military and most of the ones I try and stay in touch with, I have more in common with that just genetics. I went through Recruit training 3 times. I was in the Navy (Reserves) and went through 2 weeks of Basic, Military school was harder being a Private for a semester (just like West Point), the 8 weeks followed by a relaxed (if one can call it that) and additional 3 weeks.

On top of that, I was a "closet Child". I started baby sitting for my mother before I turned 10. I missed over 60% of 1st 2, and 3rd grades of school because I either had or was exposed to some sort of "Covid" of the day. My parents ended up with six of us "kids" and I took care of all of them at various points growing up even branching out as the most desire able male baby sitter in the "hood". On top of all that, I have worked some very isolated (lonely) jobs all on my own as have a number of you all at one point or other.

Am I getting better? Yes. I still do not have a regular appetite and I still do not abide by the clock or even sun light or darkness. I still have yet to take a shower or even change clothes but I will today. I try and get at least one or two things done each day. Sorry, today is the day I gotta tackle some chores. Thanks for the thoughts, suggestions and prayers. The caretakers for hire drained all my booze. I can't seem to want to replace any of it, Last time my daughter was out (this year), she found the evidence after noting all the beer I had on hand had expired in 2018! God Bless yo all. I will be lurking in the shadows and I see or find something that may help others, I will certainly chime in.

 

[SeaGunny]

Recovering. My personal observation is that none of us who go through this will never fully recover.

I left Viet Nam in 1970. I was back in 1975. At the end of my tour in 1970, the "freedom birds" had been rocketed and was damaged and had to be taken out of the line up of those planes taking returnees back to the "Land of the Big PX" (United States). After having been checked (several times - as in more than 3) for drugs and anything illegal, boarding the plane was anti-climatic. Bored, not knowing a soul out of all the other Marines that boarded that flight, we took our seats and dis exactly as the real honest to goodness "round eye" stewardesses who wore enough perfume to be smelled a 1000 yard down wind and about 200 yards upwind, As we readied for taxi, they made sure that we were seat belted in and as we got ready for take off, they noted we were not talking. Why? I did not know. I am sure others were in the same boat,and did not know any others. We were intent that that plane get OUT of missile range - we were, after all in a hostile country. Just knowing we were now a disarmed, sitting target did not make us comfortable. One stewardess, was getting fear stricken. She got on the "phone" (that is what it looked like) and I could see fear on her face, she was talking to someone in the cockpit in fear in her voice, panic on her face stating that "they are NOT talking!" I can still see her face after all these years, the fear on her face. I a sure many were like me - nothing to say. Glad to be leaving what we were leaving behind, and evaluating what we faced in the future.

The silence on our end, was finally broken as the plane gained altitude, Some other Jarhead who miss-spent his singing class fees, broke out in a out of tune broken and rough voice his version of a song that was popular of the day (I do not recall the name of it) "If Your going to San Francisco."

2023 / 2024: To this date, if I hear that song, it will at least tear up my eyes. When my daughters decided to have their husbands get me out of the house here for "Christmas" (actually it was the 29th) to go do one of my favorite "exercises" they seemed to have overlooked that these are often socialization events for me. They took me to the "exercising place" and then out for "breakfast". Who was I socializing with? Other Viet Nam vets. It doesn't take us long to ID each other either through some marking or by age and language. Something gives us away to each other.

Now, while I really do love to see my daughters, I do know they have their own lives to live and that they are also part and parcel of another family and run on a different social circle, I was a bit miffed to not be at my sisters tomorrow (today actually). So I will have to call my sister and tell her Happy Birthday. I have had to play off the actual Christmas Eve and Day as just another day. However, since I have been "banking" some sleep hours today, I will wish you all Happiness, Health and wealth in the New Year and do not forget to have some ham and beans backed up with some Black-eyed peas.

 

[SeaGunny]

Lol, "military clock" Loved that and it is quite humorous at some level for me. Up before the break of dawn in the bunk at 10:00 PM.

I worked a 12 hour shift (Viet Nam), got a short break to grab something to et, before taking my post as a sentry for the first 4 hours of "night". 2nd shift watch never reported and I was not "relieved". 3rd shift never reported and I was not relieved. after dragging my rifle going back to work, Boss (a Captain) as why I looked like - well - bad. I explained it to him and he took me up to the Sergeant Major. Sergeant Major then :gave me the day off". Yea - right, The 500 man unit I was with had ONLY 1 person of the job I did, So for the next 12 hours of my "day off" I worked loading flat-bed trailers (like the semi-size trailers). By the time my head hit the pillow, I have been up over 36 hours straight and I would swear my veins carried 100% caffeine. Another time in a 7 day work week, I worked a minimum of 8 hours in an office 6 days a week. In that week I wrote 4 contracts (a months worth of work). To each individual to the city for a physical. I drove through an ice storm and then a snow storm. I finally got back on a Sunday night and took Monday off. Keep in mind, if I worked the office, I was not driving so the 40 to 50 hours office time - no driving the company car! When the odometer of the company car I drove was checked Monday, verification was required. The company motor pool was puzzled and wanted someone else to check the odometer (something we did weekly was report how many miles had been driven that week. I guess I took everyone by surprise. I had logged 48 to 50 hours of office time and still in that 7 day period drove my company car 3,000 miles! Not only that, but through ice and snow storms. U.S. Mail has nothing on me!