Past CALS Rollcall

[Doing My Best]

Marnes, my heart breaks for all you're going through. It may seem impossible, but I do believe you'll come out the other side and have a life, not without lingering grief for your true love, but some new kind of life that may bring you new sources of fulfillment eventually, maybe as your daughter has her own joyous experiences over the years. You are very young, and healing may take years but you have a lot of time ahead of you. I hope you find peace. Good that you're taking meds and doing therapy, hang in there and try to have faith that light will start peeking into the darkness at some point.

Sending love to everyone, as we navigate the holiday season without our PALS. Nothing is easy.

 

[cb81042]

Oh wow @Marnes77, so many parallels in our journey and the aftermath. I, too, completely neglected my own health due to the insane stress of caregiving. I compare the last year + with my PALS to parenting an exceptionally large toddler who was old enough to drink. Having parented several toddlers (they are teens now), the experience wasn’t foreign to me, but it still drained me and left little energy for taking care of myself. I’ve gained a lot of weight, my blood pressure and anxiety are through the roof and I my drinking habits rival my college binge days.

I went to brunch with friends today and they asked the dreaded “how are you doing?” question. You know, the one that either you answer smoothly or you burst into tears. I did the latter today. I’m functioning and moving forward (ie, clearing out the medical supplies, making some little changes around the house to make it my space instead of the space I shared with my dead husband, deciding what mementos are important enough to save and what is just emotional and physical clutter, etc) but I’m also still pretty sad. Even though his cognition was crap by the end, I never doubted how much he unconditionally loved me. He really did set the bar high for how I want to be treated in a relationship. Not that I’m entertaining the idea of another relationship any time soon, but our courtship, wedding, and first few years of our marriage until the first subtle signs of FTD started to appear (hindsight is 20/20) were straight out of a fairy tale. We had both been divorced before, so it was a relationship we both wanted. Not just something that was to check off items on an adult bucket list. So it’s sad to think that the fairy tale was cut short and that I might not experience that kind of love again.

I also realized in answering that question that I still have a lot to process about the hell we all went through watching ALS and FTD take away so much from him and being the one to pick up the slack behind the scenes. And I also have a lot to process about losing something that I valued so much in such a brutal way. The last few days at home were a labor of love - it was not as peaceful as I would have liked, but we did the best we could with what we had at the time. I’m a nurse and have seen some difficult deaths, so this wasn’t my first rodeo. I hated being on the family side of a difficult end of life process and I am worried that my kids are more affected by it than they are letting on. I tried to normalize a lot of what was happening (because a lot of it really was expected and part of the process, like the terminal delirium) but even I wasn’t prepared for how intense and difficult it would be.

I packed up the family memorabilia for his sister, who I don’t want to see because she and the rest of the family are electing to disregard his wishes and hold a memorial for their own closure. It’s complex, sad, but mostly disappointing that his family is making it a grief show about them.

Shoot, I know there were a few more things from others I wanted to comment on but I can’t easily get back to that page without losing this whole novel of a post.

I appreciate the welcome and am sorry that we are all members of this terrible club. Those of you having a tough time this holiday season are on my mind.

 

[Tomswife]

I asked the ALSFORUMS a while ago to get rid of the maniac smiling heart face emoji. We need a hug emoji and a heart emoji. But no change was made.
My hug and heart is with you all. The next few weeks will be tough. Remember the love. I am so grateful for my Tom's love.

 

[wishmobbing]

Hey guys! Holidays are creeping up and I know they can be hard on some folks. So I just wanted to send all my fellow past-CALS an extra helping of gingerbread, tissues and hugs.

 

[vltsra]

Merry Christmas to my fellow past CALS. I am alone this year and it has been harder. I miss my sweetheart. No one can understand the suffering we all go through with ALS. I wish all of you healing and peace.

 

[rmt]

Merry Christmas to all! This time of year is so lonely, even though I'm surrounded by my family.

 

[Mary2]

Merry Christmas..I am up and ready for what the day brings. I hope to honor my husband as best I can.

 

[SeaGunny]

CB, sorry for your loss and even sadder at the drama of the aftermath. Wishing you and everyone a healthy Happy New Year.

However, why am I responding is you bring up a point. While I am no stranger to death, I generally was a few yards away or further and had little to do with the aftermath - meaning not like in a hospital setting.

Moments of deaths and immediately After when present at Passing. My personal opinion, is that CALS, at some point need to be appraised of what can and does occur at the time of death and some things that may reduce grief in the aftermath and give some consolation. This means a mix of faith and clinical information to better prepare CALS for the Passing of the PALS, I also wouldn't rule out that the CALS could predecease the PALS, though this would not be common.

Ceremonial: I was frankly quit put out at the lack of "concern" and or "after care" (if those are even the right words) after the passing of my wife by her church (she was Southern Baptist - I am a fallen Roman Catholic).

Passing of Women: As what happens in the passing a a number of women, turnout for their funeral seems to lack some kind of attention and attendance. At the grave site services for my PALS, we barely had enough manpower to move the casket! The total number in attendance at the grave site service was limited to the immediate family (2 daughters, me - the hubby, a son-in-law, and a neighbor. No chaplain, no minister, so as the husband, I did the best I could. The "celebration of Life" at my wife's church went well as that was coordinated by my daughters who helped massively with the details. Minister took notes and did an excellent job as Master of ceremonies. Am I expecting too much?

 

[Tomswife]

Seagunny. The rituals to mark the passing of a loved one vary greatly depending on heritage and religion and life philosophy. My Tom was cremated after the Catholic wake and funeral where he was laid in a coffin.
The wake was attended by all of his cousins who enjoyed a loud family reunion there. None of the cousins reached out during his illness, or even sent a card. I stood up and spoke at the wake, first about ALS to educate the people there about it and then I spoke about Tom. I wanted to tell his family that it was not a reunion, but I let it go. I hope I never see them again.
My brother the next day said to me - wow you were so strong last night when you spoke. Thanks I said. But no one knows I went home and threw up.

The funeral service in our RC Church was beautiful as I had planned it to be. The deacon who came to our home during Hospice spoke about his witness of our married love.
My daughter and I interred his urn at the RC cemetary where I will later join him. We were alone. I found prayers online for ashes and we read them, just the two of us. I go to visit him at the cemetary sometimes.

My heart goes out to you at this time. I am glad you have your daughters. I had left the RC Church years ago and then returned about 6 years ago. I am very glad I returned. The bereavement group at Church has been very helpful to me.

I am walking and hiking. The photo is at the trail head of a five mile hike I did Dec 31.

 

[SeaGunny]

I am truly sorry for your shall I say "burial process". I am very familiar with the Wakes as I too am RC - a bit of a backslider - but a RC non the less. My wife was Baptist. I attended my wife;s church on occasions - but that is another story. The wakes all seemed to start somber but end up more of a reunion. Had one for my grandfather and years later, one for my grandfather. All the same. However, we did not hold one for my wife. Usually alcohol flows with these events which loosens up everyone.

There are many regrets that I have in the care of my PALS. I did have help from PALS church members and her friends. mainly in the form of home visits that occurred all to infrequent. I have gotten high praise from family, friends, even the last caregiver, I still have regrets that I fell short. I did get help with PALS siblings (6) who visited when they could (all are scattered from NC to NV) , and 3 and 4 siblings (of my 5) (from OR, NM, TX) spent time on occasions to actually physically help, one sibling who went out and rendered financial aid during the trying and dang expensive time, I did my (almost?) best to ensure PALS never felt abandoned.

When we first married, my new bride found I could curse like a sailor. She did not know initially that I had been one! (she eventually cured me of that ~ for the most part). I am glad you explained ALS to your gathering. It certainly fell on some deaf ears, but there may be one or two that will carry those thoughts to hopefully do some good or render aid to those in need in the future. Our Hospice "chaplain" was much like the Maui FEMA guys - out to a sabbatical when they were actually needed. The day before she passed I called for the Hospice Nurse who never showed up, and had to call them again the morning of her passing.

If my local RC still has that real Irish Priest, I may go back on a regular basis. However, in my youth, I was an Altar Boy and some of the changes in the church appall me. Jose handing out a communal chalice for a swig of the sacramental wine to wash down the consecrated host that some female is handing out like "take one"!

An RC priest on America's frontier had both thumbs and forefingers cut off by Native Americans so he could not do his "magic". He ended up going back to Rome to have his other fingers blessed so he could perform Mass. Also, the "real" Popes were numbered and that there were only going to be a certain number of "real" Popes. The Nuns even knew the exact number which was not all that many. By the way, we are now out of "real" Popes.

Due to my military service, I had my PALS interned in the Fort Sam Houston National Cemetery in San Antonio. I had planned to have her buried in her home state of Arkansas but the National Cemetery in Little Rock was full and and additional $5,000 would have been charged to me to have her remains shipped and held until burial was scheduled. I found out that the National Cemetery in Fayetteville Arkansas was still opened - being newer and all, but that would have been at a cost of shipping and retaining the remains probably about $5,500 is my guess.

My wife would have liked you, She loved to go for walks Me - not so much. I also hated running (not conducive to physical fitness). However, the trail you pointed out might be very interesting and I could probably be conned into taking a few hikes through there. I loved the scenery back east. My spouse was 5' and I was 5'9" (now 5'8" - age you know) and my stride, even slow I could easily out pace her, and at military stride, I would leave her behind fast! On running or moving fast (and I am slow) surprised everyone - except the long runs were I was just average. I bought her and a daughter earmuffs designed as sound suppressors that had a built in AM/FM radios so they could listen to whatever when out for a walk or doing chores out in the yard or when the hubby had music playing way too loud (not by me) some of my wife's complaints about me is that I was too quiet around the house, tuned every thing out when working a project and loved to read, I also liked to sail! I can also swim (I think I still can - been a long time since I was 100% wet aside from a shower or two.) My wife could not. So when I took her sailing (on the ocean in California), unlike most women who donned shorts or even swimwear, loose tops and maybe a hat and sunglasses and go barefoot where as my wife would show up wearing sneakers, a fluffy looking "jogging" (?) suit, don SPF 99 suntan lotion, sun glasses, a broad brimmed straw hat and put on a life vest immediately upon boarding the boat!

Well, unless I had your e-mail address, this is getting a bit much in length and details.

 

[Mary2]

Sailing with your wife in California must have been a great time! I almost went for a walk at the local State Park today but got side tracked into looking at a car instead. i could have gone alone later but I am fearful of rattlesnakes that exist in this part of GA.

I 'd say your family did an okay job coming to your assistance. They could have done better for sure, but they weren't completely out of the picture. The one who provided financial assistance is to be commended. I didn't have hands on help at all from family. A little bit when I took my husband to my son's wedding. And a few times, some help from my son. I did have one care worker who stayed with us 16 months.

My son doesn't want to talk about his father and my friends feel sad about their losses if I mention my husband too much. I didn't have much emotional support then and don't really now. My emotional support is through social media.

I am considering a hybrid or a full electric car. It is a learning curve to find out about these. My son thinks I am rushing into things because I want a new used car. LOL, I have had several Honda Accords and have been looking at the same interior of a car since 1997! My present car is a 2007 that I have owned since 2012. So I am alone in making this purchase as well.

I also want a new couch which again my son feels I am moving too fast. I have owned the couch that is in the living room since 2002. I paid to have it moved into the family room. He didn't help me move it into the family room. So since it looks like I am spending money, I must make this purchase alone as well.

My curtains are very close to the pattern one of the presidents used for his chairs in the oval office. I love his oval office and want to design my living room similar to this. My husband chose the curtain pattern so I want to keep the curtains. My son isn't so crazy about copying an oval office but someone else on social media says it is the same as copying a picture out of a design magazine. But I feel alone doing this.

My sense is that you did a fine/good job caring for your wife. I cussed during the care at times. I think the adrenaline from cussing gave me the energy to go on. I know you tried real hard. To provide the physical care while trying to provide emotional care and quality of life for our spouses is especially challenging. This is especially true if the entire situation has been going on multiple years. If the care giver commended you on the job you were doing, you were probably doing a darn good job!

Happy New Year! And I know 2024 will be difficult but also have some joy with it as well.

 

[SeaGunny]

Well, I guess I will wear my cowboy boots (and hat) to Georgia this summer. I found out a great great grandmother had a distinct fear of these critters. At Camp Pendleton I had to warm my subordinates that it was a $500 fine if the killed one. As I walked aawy I noticed a Rattlesnake skin drying on one of the bushes. Had to call Wildlife Control for a Rattlesnake infestation at the Children's Nursery on base!

CARS: I do NOT recommend you buy an all electric vehicle. Too short of a range (about 200 miles at best) and I have seen or heard of a number just burst into flames. Too many little issues such as shorting the circuit out and locking passengers inside. Toyota does a nice job in the hybrid department which is what I would recommend. I have had a Toyota Camry 2021 which had a 4 cylinder engine that got better than 30 mpg on the highway giving it a range of over 500 miles on a 18.5 gallon gas tank. Then (PALS wrecked that one) I bought her a 2002 Camry XLS (?) as instrumentation was exactly the same as the 2001. However, the new one has the 6 cylinder engine. More power (I like) but that engine has two drawbacks. Same gas tank of 18.5 but reason number 1 is that it has a "rubber band" for a timing chain while the 4 cyl had a metal chain type (way longer lasting). 2nd reason is the gas mileage does not doesn't quit get 30 mpg - even on flat roads giving one a range of around 400 plus miles. Difference in performance based on engine size is almost non existent. I am looking for a car but I am in no hurry.

Interior Decorating. Do what makes you happy. I am doing the same thing. Some of my furniture does not fit. I have gone from Home to Home / Hospital and now, without feminine influence I can dang well do what I want. The hired help that came in destroyed my (our) couch which looks like it was done with sweating feet. The room which satisfied my spouse (approved and put together by her) never met my expectations for a "living" room. Believe me, I am cleaning and will be cleaning for a long time,

Grieving. Well, social interaction is good. Sometimes scary while at other times, it can get you out of the "cabin" and can become funny. I thought about getting a dog. The dog would require too much of me. I would have to feed him - when I can't even remember to feed myself. Also, I am a lousy cook at best and I hate doing that and the follow on tasks of washing dishes, cleaning the kitchen etc.

Guy friends: Most have moved away or died. Crap - I feel like the "Sole Survivor" (I also watch a bunch of military movies - I know I am not the one being shot at. It is (regardless of the scene) :movie magic". I watch non-Americans do reviews of these movies. Some are too funny. I saw a review by two Brits who watched this movie, In one of the early scenes, it show a barber cutting a recruits hair, giving the guy a "buzz cut:" or rather a humane scalping. However, this small detail is wrong. The do not shave your hair from front to rear. Rather they cut the new recruits hair starting with the nape of the neck, cutting up and over the top of the head, leaving the shave hair in the recruit's lap. They then finish up doing the same on all the other "swipes" leaving as much hair on the recruit's lap as they can.

Girl Friends: None. I would have to probably go on some dating app. Not likely.

Music: I have to watch what I listen to. Some music, (some reading) some movies leave me with tears in my eyes. No streaming tears - sorry - I do not break down that far. Charlie Daniel's version of "Devil Went Down to Georgia" puts me in a fortified "Can Do" Attitude.

God Bless, Stay in touch.

 

[Mary2]

The one year anniversary of the passing: I am so proud of Paul. He learned to use the eye gaze and would text messages. He stayed interested in everyone's activities and current events. He was kind to everyone. The day before his passing we watched Interstellar, The Martian, and 2001 a Space Odyssey. He was alert and interested. He had quality of life all the way. The medications worked and his passing was peaceful.

Having not cried much before hand, I cried an ocean this past year. As much as I gave...and it was a lot over many months.. many years before the bi-pap and 2 years on bi-pap and as a quad with a hoyer lyft....as much as I gave, I wish I had loved even more, cared even more. I did treasure many minutes. I knew to treasure them and I have them as memories.

I feared being a widow, as it reminded me of being single in my 20s. But being single this time, there are memories and I know I loved someone and he loved me. The tasks are not much different from what I was doing before he passed. And I handle the taxes and change the ink on the computer just fine. I purchased a gas vehicle, figuring I would not be driving as much as a younger person...a used Toyota Rav4. I am pleased with it.

I do do sad music and candles. I just played the Pachelbel Canon in D. Yesterday I watched a documentary on the space program. Today I plan to watch The Great Courses lectures on the Persians. My husband loved space and history and walking. Today I plan to do all three.

 

[rmt]

I sold the house in Portland where my husband and I lived for the last 9 years of his life. The sale and clean out of the house went very smoothly. I cried a lot as I went through all of the things in the house. And laughed a lot too. So many memories. I thought it was going go be hard to drive away for the last time, but it wasn't. It was time and I was ready. We already had a house in Seattle (purchased a year before his symptoms started for when he retired) and my PALS knew I would move to that house after he passed. He was happy I would be close to family.

It has been 2 weeks. The first week, I felt like a huge weight had been lifted. It felt great to not have to think about the Portland house and what I needed to do with it. But this last week has felt different. In a weird way, I feel like I don't know what to do now.

The last 18 months have been filled with all of the things you have to do when your spouse dies. Now that the house is sold, there are no more "wrapping up" things to do. So, what now? What does my life look like going forward? I think about and talk to my PALS all the time. I still feel like a "we" but now it is just me.

I'm enjoying Pilates classes and playing in an orchestra. I get together with some old friends once a month for lunch. I hang out with my parents all the time. My brother and I are going to hike the Grand Canyon Rim to Rim in May, so I've started hill training. Most of the time I'm happy, but there is always a sadness just below the surface. I don't feel raw and emotionally out of control, like I did for the first 12 months. Now it is a deep ache that never really goes away. We used to say that we would rather be anywhere together than anywhere else apart. And I think about that all the time. No matter what is going on or how much fun I'm having, I would rather be somewhere with my PALS. And it breaks my heart that it can't happen. I miss him so much.

 

[lgelb]

You were already mourning him. Now, you're mourning the home you shared. That's a lot for 18 months.

Even when we add or rekindle joys over the same period, I think many of us have that underlying ache that we can't share the things we enjoy or at least our enjoyment of them with our absent PALS.