Dealing with anticipatory grief...

[soonerwife]

I understand the lonely feeling. I am so very lonely even though I can see my PALS across the room.

His inability to speak is so isolating. Although it seems as if he has been withdrawn pretty much since his first symptoms, even before diagnosis.

I have a hard time getting up in the morning to go to work but I am so glad that I have co-workers there to interact with. I wonder how I am going to handle it when I need to be home all the time to take care of him.

So sorry this is so hard for all of us.

 

[scaredwifetx]

I am over my little...OK med breakdown today. I made a batch of Honeysuckle soap, a batch of Rosemary/Lemon soap and getting ready to make lotion bars and sugars crub. I am not sure it's staying busy or the scents that help me. I am bringing you some Soonerwife. You deserve it. Can't wait to meet you. Hope you can think of a great place to meet. Excited to meet you!

 

[gooseberry]

This disease robs you of many things. The feeling of being alone when someone is with you is really hard. Music helps, getting any break will help,calling a friend for a chat, etc. Anything that will make you feel connected.

Since Steve died, I took about 3 months and Julien,my son, and I focused on us. Now we are starting to go see people, invite them over, etc. But the group has changed....we invite the people that helped us and supported us. Those that left us to twist in the wind are not invited. They have no idea what we went thru and judge us.

You will find your path. If at all possible, get counselling. It really helps having a sounding board.

 

[soonerwife]

I can't wait scaredwifetx! What is your favorite kind of food? With that, I should be able to find us a really good place!

 

[Narrowminded]

Loneliness, I can totally relate. Feeling a lot of that lately and I still work outside the home. Getting together with others is never easy, at least not like we would like it to be. And even when we do, it doesn't always make us feel less alone. They don't have a clue of what we face. They see us for small snipits of time. During that time, we maybe able to sit and talk for a while, but they don't see the whole 24, so they don't realize what it is really like.

Sorry, I'm in pity party mood today and have been most of the week. At least I know I have friends here to do totally understand. Thank you all for being here.

Sue

 

[Aussiemndcarer]

Bruno, I've been to Prince Edward Island! In 2000. It was a destination on a study tour I was on,all the way from Australia. I felt like I was on top of the world ! I understand how you felt,walking along the beach, collecting shells & feeling like every worry will blow away. My PALS and I were doing that exactly 12 months ago. Only my beach was in Broome Western Australia. Today we are riding a chilly winter out by staying close to the fire. No more can we roam on beaches, but the memories are there. I feel lonely too, even though I have family around, it's a solo journey sometimes. Thank heavens for this forum.

 

[scaredwifetx]

Soonerwife, I like a variety of foods so pick your favorite place. What's your favorite scents?

 

[soonerwife]

scaredwifetx, I like floral scents the best, I think. When we meet, we have to take a selfie and post it for our friends here to see.

 

[Atsugi]

her dependency on me has increased significantly in the last month.... I am scared as to what tomorrow holds for me because of every day is as lonely as the next.... I am concerned as to how much of a basket case I will be after... alone with my slowly dying PALSe

Hi, Hubby caregiver. I have some good news for you. First, let me say I totally know where you're you're coming from; we all do. But, however, we're all different personalities different personal situations. So lead different lives after our PALS pass away.

Some of the CALS here have started dating pretty quickly after the funeral and seem quite relieved and happy with their new lives. I think these folks were always gregarious extroverts. When their PALS were finally relieved of the suffering, so were they.

At the other extreme, I've heard of PALS so heartbroken they seem to be crying for years after.

As for me, I was depressed for a couple years, and did nothing all day. In the night, I would think how sad it was for her to be taken away so young. Lots of thoughts went through my head: start dating? get a job? move away?

Now it's been 5 years, my kids are in college. I have no job, no classes, no social life, nearly no relatives and scarcely any friends (certainly not around here). Sounds depressing but I'm actually doing quite well.

I know I can do anything I want. I've taken my kids on several European vacations and a cruise, and I expect to go to Saipan next. I've been writing a book and have a workshop where I tackle ever-increasingly difficult wood crafts. I helped my son build a canoe by stripping wood and coating it with fiberglass. My days are just as busy as I want them to be.

Will you become a hermit? I don't know. But if you do, you can always choose to be a happy and fulfilled hermit. For us survivors, there is life after ALS. Just like any other life, it is what you make of it.

 

[Hubby caregiver]

Laurie, yes we are on FB. We mostly post family and friends likes, comments and/or shares. Nothing about her condition, the disease, the struggles, etc. After her surgeries, her daughter set up a blog for her, she used it and got good responses from it from as far as Australia and Europe. For little over a year, she kept it up; but dropped it abruptly with a post that she was going to title "The Last Post" (military reference)... Lately, her daughter refreshed the blog nicely and I have her set up with TV computer screen in the Family room in front of her recliner. She has yet to reach out that way. She FBed during our trip with tons of pics, which I enjoyed seeing her do it, edit/delete pics, etc.
We do reach out but it's on her term. We had family (bro and s.i.l.) over yesterday. It was great, BBQed and chatted. Her brother was here so she showed as little discomfort as possible, while downing the morphine. She had to be significantly more alert during the day than usual so I know that today will be a down day; even-thought today is a gorgeous day. When and if we have friends over, she again looks great, is engaged as if faking it for the company and I end up "paying for it" the day after. Her weakness is making transfers more challenging. The lift comes in this week; so is her other brother, for four days. He was supposed to come give me a break, so I can go fishing. Because of the situation with her current condition, she does not want her brother to do what I have to do... So guess who's parking the boat... It will however be nice to have someone to chat with before 10:00 in the morning. Speaking of 10 o'clock... Gotta run.
I haven't had a chance to read other replies.
Also for the "woe is me for being alone", I know I am not alone here. You guys get what I I'm going through... but still feel isolated.
B.

 

[Nuts]

Bruno, I'm so sorry that you won't get your four days of fishing. I hope the company is good for you, at least!

Reading about how you wonder about the future I was reminded of a neighbor who passed away recently. He cared for his wife for 27 years--the final 3 that I knew him it was fulltime and very taxing. After she passed, I started seeing him out on his boat, with his dog, every day at 4. It became a ritual, and they both enjoyed it immensely. He eventually met a lady, ended things with her, and then had a very satisfy relationship with another lady. He was north of 80 when he passed, and while his wife was every present in his thoughts, he moved on and made the most of the years he had left. I can see Heidi (our dog) and I taking daily cruises on the lake. I don't care if anyone else comes-I think I'm going to want to be alone so that I don't have to worry about, think about, or accomodate anyone but my dog. At least for awhile.

Becky

 

[Hubby caregiver]

Solo journey indeed, Aussie.
Thanks for sharing. What is your level of care now with your PALS? How do you cope? For me gardening does the trick, walking the dogs rain or shine, time on this forum.
This is happening very fast and I am finding my path daily.
B.

 

[gooseberry]

Hour by hour,day by day....it is the only way to make it thru.

 

[Aussiemndcarer]

Hey Bruno, my PALS cannot walk or weight bear anymore. I use a hoist to move him from bed to chair to toilet shower chair etc. he is totally reliant on a vpap machine ( Aussie term I think) ( similar to what you call trilogy, maybe?) [Mod: ResMed term for BiPAP] whenever I transfer him. He only takes it off to shower,eat and clean teeth .

He is so reliant on me to be beside him. I have good days and bad ones. Luckily We have two sons who have returned home to help out with our business and farm etc. I often wonder what will be my world when he goes? I have decided to be his primary carer. We haven't had any outside carer come in yet...... I really miss the intimacy of what we once had. Even our discussions don't always touch what we really feel. It is as if we are protecting one another .

How do I get by?? Well,I think maybe I am getting by day to day. I'm not at all good at looking after myself. Haven't seen a hairdresser for ages! But that doesn't really bother me too much. I used to go for long walks around the farm,but I can't leave Jim for too long,so that is out. I am really good at day dreaming,some people call it mindfulness I think. My PALS has an amazing family who are very supportive too. They ring often, and I always give the phone over to Jim.

I seem to be only able to use this forum to tell it as it is really. I start telling my sister how things are (who lives interstate ) but I often trail off as I don't think they really grasp how every day you loose a bit more.

Oh, and the other thing that we do,that I really love,is make shower time special. It is difficult now,Jim has to have a shot of morphine to get through,but I use some really lovely liquid soap ,nice shampoo etc and I altered the shower head,put it on a long connection with a variable shower head. That way,I can water massage his back. Our neighbours helped to put in a ceiling heater/ exhaust light,so the room stays warm. Funny how last year,I wouldn't have thought that this would be important. Now it is. There is no way we are allowing a carer to come in on our intimate time!

I kept a diary last year when we were more able to do things. I read it out to Jim in the mornings. Since coming home from a big trip, I haven't kept it up. I should really start again.........

 

[Hubby caregiver]

Aussie,
"... I really miss the intimacy of what we once had. Even our discussions don't always touch what we really feel. It is as if we are protecting one another . "

"... but I often trail off as I don't think they really grasp how every day you lose a bit more."

Ditto to that !!!
B.