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Mojoloco

Active member
Joined
May 12, 2015
Messages
35
Reason
Lost a loved one
Diagnosis
01/2013
Country
US
State
Minnesota
City
Anoka
Hello- I am new at posting but I have been following along for quite some time. My wife was diagnosed two and a half years ago so I have had the same ups and downs all of us caregivers have had. So far I have been holding my own but today has been a turning point. She is now on home hospice care and no longer seeking treatment.

Today was going to be our last outing, an overnight stay in Wisconsin at my nephews wedding. We were both looking forward to it so much. A friend came over and did a makeover for her. She was beautiful. All week we were working on pain control. She has limb onset and is a quad - no movement from the neck down. Her speech and swallowing is good, but her breathing is becoming compromised. Because of her immobility her back and joints have become quite sore. The last two days we doubled her morphine intake in anticipation of this trip but it was not enough. We returned home After traveling halfway there because the pain of being in the wheelchair was too much.
I have not posted until today because I have been focusing on her needs, not mine.
However today was like the day she was diagnosed because the finality of ALS once again kicked us in the butt. I have tried so hard to tweek things for her to travel but it didn't work. I will keep trying. I was so hoping that she would see extended family one more time.
I feel that I am on my own because she wants to insulate herself in our home and be comfortable in her cocoon. I get that but I need others to help me. I haven't worked(as a carpenter). for a year and a half because she can no longer move.
I have seen the compassion of everyone here and feel that only you folks really know how I feel, even though I am new. ALS is not new to us and I think that we have been successful at keeping ahead of the monster. Your stories have inspired me and I will try to help others the way you good folks have. Thank you. Mojo
 
Oh, Mojo, we do understand. I couldn't have survived this journey without good friends by my side. Hopefully with home hospice you will be able to get out and see friends, family. It is so important that you take care of yourself by renewing your spirits as well as caring for her. Sounds like you have done all you could to make her journey easier. Hugs sent your way as you reach what seems like the end to this long, painful walk before she is finally free. You need have no guilt as you've been by her side giving her loving care. Donna
 
Mojo, I am so sorry that you feel so alone. As you know if you've been reading, you are not alone and we do understand. Some here more than others, but even those of us earlier on the journey can appreciate what you are experiencing.

It must have been heartbreaking to have turned around after everything you did to try to make this last trip. It sounds like it's time for family to come to your wife. Do they realize how impossible it is for her to travel now?

I get her wanting to be home if she is so uncomfortable, but you do need help. It also sounds like she is ready to be done with this journey. I can't even imagine the pain and lonliness of that...
 
Thank you for your compassion. I feel that I have been on this road a very long time, even though it has not been that long. People empathize with me, but only those who have lived with it can come close to understanding. Even then each situation is so different. There is a common thread that exists in the stories that I have read here, which is unique to us as caregivers. I am an introvert and am not used to expressing myself as eloquently as the people here. If there is an upside to this disease, than I am benefitting from the knowledge that life is precious. I feel that it is an honor to help my wife through this. She has made a lasting impression on all of the wonderful health workers and new friends we have because of this. This makes me count my blessings
 
Sending you a hug Mojo! you are right we understand and we are completely on your side. So sorry about your wife, it is so hard and terrible to watch someone you love go downhill. It sounds like the failed trip sort of defeated you guys. Sometimes, just talking about it makes it easier to deal with though, and I can see what a strong person you are. Please stay with us, and join this little club.
 
Hi Mojo and welcome.
Love Gem
 
>Sometimes, just talking about it makes it easier to deal with though, and I can see what a strong person you are. Please stay with us, and join this little club

Ditto that!
 
Welcome to the posting side of the forum. I don't post much myself but do find comfort in logging on and reading some of the post and seeing how much the CALS & PALS care for each other. Knowing that the people you are reaching out to understand the emotional roller-coaster you are on and the needs we all have is important. Hang in there and we will all try to help you through this very difficult time.
 
Hi Mojo, Welcome to the forum. Feel free to post whenever the mood strikes you. Sometimes you just have to let it all out. We do understand about the isolation and some of the challenges even if we are in a different place in the journey. We are here to offer you support and strength as you help your wife. Steph
 
thanks mojo for sharing your's and your wife's journey. it means a lot to me as i am just starting out and appreciate any experiences pals and cals offer up. good thoughts to ya chally
 
Welcome mojo, what a let down it must have been for you emotionally to prepare like that and have to abandon the trip.

As a carer you do have feelings and needs too. Of course we put them aside for our PALS, and often it's the correct choice - eg you wouldn't insist your wife go ahead travelling in pain. But it doesn't mean it didn't impact on you. You say you don't express yourself well, but I would say you did brilliantly.

I think it is way past time you allowed yourself some support here, thanks for joining and making that first post.
 
G'day Mojo, there is so much support for both PALS and CALS here....
God bless, Janelle x
 
Thank you all for your kind words. After a tough weekend I finally have a quiet moment while she sleeps. If she knew that I was broadcasting our private lives the s--- would hit the fan. Actually, that would be a good thing because she is on day nine without going.. We will be successful today no matter what it takes. Oh the indignities we put up with,right? Our hospice nurse is helping me through this. The whole staff is great and I would encourage anyone thinking about the necessity of hospice not to wait.
I have always been straightforward with my PALS but I am allowing myself this outlet and not telling her because nobody can understand like those of us have been through this and I feel your support. I have support here but she likes as few interruptions to daily life as possible. As this weekend demonstrated we can no longer leave the house. So I am on my own as as PCA. I am fortunate (?) that because she can't move from the neck down she doesn't require as much help as some of your loved ones do. She still can speak and swallow and we have figured out showers an toileting. The catheter helps. That is my story.. Gotta go..an enema bottle is calling me😳
 
Mojo, trust me not all our spouses are readers here...thank goodness!
 
Nope they aren't! :)
 
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