Can somebody tell me?

[epkennedy]

Urgh! We deal with the same thing. Having younger kids there are tons of invites to birthday parties. It makes it very hard to go as a family so I usually have to ask someone to hang out with my husband while the kids & I go.

As far as friends are concerned.... The ones who bail are gonna have to live with their decision for the rest of their lives. We all know we are doing the very best for our PALS and though it's lonely it's what we do.

Hang in there CJ!

 

[10steps]

The answer is no, they have no possible way of knowing how hard and demanding it is for a spouse to care for their partner with ALS.
A good response for the person who is demanding if you will bring him is , "I really don't know whatt condition he will be in or if he will still be alive so i cant make promises...if we make it, we make it."
We have a lot of visitors and we get invited out but there is an increased level of stress with either situation. I've had more folks over to my house crying like a daily dose of a bad hallmark movie that's impossible to turn off.

All I knkow is that every day some new unforeseen caregiving shocker or some debacle happens that completely flips a calm day upside down and i just tell folks that.

Hang in there.

 

[ScarlettK]

Most peeps do not have a clue. Hey before THE MONSTER invaded our comfort zone, I had NO CLUE what CALS/PALS went through. Once more God has yanked me out of the COMFORT ZONE to teach me. I now have a reality check DAILY. Some days I say...let's stop with the PITY PARTY and get busy people cuz there are THINGS that need doing. (I Look in the mirror and say this to myself also some days).

How the ladies handle their spouses who are PALS has to be so difficult. For one, Men are stronger in their bodies than we ladies. I cannot imagine trying to turn my husband if he could not turn himself in the bed. It is difficult enough me helping my sister turn over in a single bed to help her do her stretching. Her husband is learning to do more each day after my sis SPOILED him for years. He is really stepping up to the plate, and it is not easy for him.

My sister has her church family and friends coming to fix food weekly, clean house, do laundry. They have been doing this for months now. Her adult children also rotate bringing food and helping with cleaning. I am at my sis' home every day doing whatever she needs. My daughter the respiratory tech comes by too most every day. I cannot imagine doing this alone.

Let your community leaders know that HELP is needed. Let churches know. God bless you all and I will be praying for helping hands for you all.
In Christain Love... Kaye

 

[LauraW]

Nope...no clue at all! My Aunt wanted to take Mom to their high school reunion. ARE YOU KIDDING ME! Really, no one gets it! They just look at Mom and say..."she looks great" Yes, I know because I work hard at it. And yup, my house smells like something awful most of the time. My Mother in law once asked if there was anything she could do and I told her she could come over and do some laundry for me. She said ok.....You can come downstairs and show me how to use the machine. WHAT...it's a washer and dryer...you have one. Doesn't take a genius. So, needless to say, I don't ask her for help anymore. We are having a birthday party for ME on Sat. I hope I can enjoy it!

 

[Miss]

Well, the guys came in town and over to the house. It was great. They jumped in and cleaned up the back patio, grill and yard. The pool was sparkling, and the dead kritter smell backed down a little bit. I got all of the crap in the kitchen shoved in to the laundry room, and things looked fairly decent! The boys backed me up when I nixed my husband's idea of going to the local tavern. They took one look at what I was doing and realized that it would be too much with the transporting and weather.

Maybe this is the way to do it. Invite everyone over to your house (including a few out of towners to stay at your house). Invite them very, very early - I chose 2pm for a dinner cookout! It doesn't take long to see how much work an advanced PALS is! The one that stays overnight clues the rest in on all of the "behind the scenes" care!

Anyway, it was a great weekend. My husband didn't even get emotional when folks left. The guys were already planning a football weekend at our house for the fall. I just wish more of these good men lived in town!

 

[hopingforthebest]

Dear Missy

Read your post and feel your pain. How I remember.

The answer honey is they have no stinking idea what you are going through!
How many NEIGHBORS said they wished they had stopped in and visited with him etc. etc. etc. etc. etc...........................It took a while for me to forgive....... I will never forget and will always remember.

Today, actually right now... I will pray for you sweet girl.


Patty :sad:

 

[blazonr]

I have written a list of things that people can do for us. Especially "normal" cleaning and keeping things. Outside and inside. Party be darned, I agree though that honesty is the best policy. Tell them NO... and tell them why it is hard for YOU to do. I was feeling like I was just getting lazy because my house looked like a dirty dust bomb went off and disturbed all the clutter. Then after a quiet cup of coffee and reflecting on the morning I realized... I need to care for myself first so I can care for my husband and family.
Good luck and keep on keepin' on. Take of YOU !

 

[Atsugi]

Note the time of BlazonR's post: 3:33AM. I'm sure a lot of us can relate.

The message is clear, too. As the airlines say: "Please don your own oxygen mask before putting one on your child..."

 

[AKjo]

Atsugi, let's see if I can explain what I am thinking... you referred to the time of BlazonR's post as 3:33 am. That would be in YOUR time zone - her time zone would be different. For that same post on my computer, it says 11:33 pm (that would be Alaska). BC, CA time would have been 12:33 am, I believe. Now the big question: What's my point? I don't know; I must be tired to be thinking about this! Please forgive my rambling.

 

[Atsugi]

AKjo, my point is simply this: we all work very long hours. Most people just don't understand how ALS is so much more than a full time caregiving job. I think we can all relate to that.

Lots of us have heard the advice, "Take care of yourself to ensure you don't burn out. You're no good use to your PALS if you let yourself burn out." But it's really hard, maybe impossible to take a break for your own sanity: although my PALS is in hospital right now, I'm go absolutely nuts because I'm not the one feeding and toileting her. At the hospital, I rearranged everything, because the nurses just didn't do things up to my expectations.

In fact, when I asked a month ago about respite, it seems that nearly nobody has actually taken a respite. We must be addicted to pain, or perhaps simply in love with our PALS.

"Sick people have such deep, sincere attachments." --Blanche DuBois, in A Streetcar Named Desire

 

[AKjo]

Atsugi, I am so sorry that you are not able to relax even when your wife is in the hospital. In fact, it sounds like things are only more stressful. You would expect competent care would be available. I sincerely hope things get under control for you soon.

 

[brooksea]

Y'all have kept this thread alive, so I will comment further.

When I moved here as a military brat at the age of 15, I had no friends during high school, because I was different (moved from Europe). But the friends I made afterwards, I've tried to keep close to my heart. Sadly, most or none call. I was brought up differently by a mother that took me to (most memorable) a mission in downtown Omaha when we lived in NE. We volunteered every month for a while. I helped little kids with coloring, crafts and finding clothes in the clothes closet. I will never forget that. My parents brought me up to help others, even when you need help yourself and to recognize the need of others when they are too proud to ask for help.

We watched a movie tonight that exemplifies what we should really expect from each other. It is very religious, and I was brought up that way. I'll leave it at that.

"The Secrets of Jonathan Sperry"

What I mean to say is, other people know when you need help. PERIOD. If I could recognize that as a child, I can and do recognize it as an adult. My husband and I have helped our friends many times, even after diagnosis. So, it pisses me off that I would have to ASK for someone to recognize that I or my husband might need a little help. After all, these men have known each other for years. Suck it up and be a woman for God's sake!

 

[epkennedy]

If and when your PALS is in the hospital it it critical either you or someone familiar with the patient stay right there with them. As we all know and realize, each ALS patient is different. Hospital staff may seem uncaring when in fact they are uncertain how to care. I speak from experience.

 

[AKjo]

Ernesta, I like the way you think. You are right - the needs of PALS are complex and different for each person, and there is a learning curve for all situations.

 

[Jason's Dream]

I can totally relate. *hugs*

My MIL told me the other day, they were trying to have a birthday party for Jason's grandfather's birthday in the middle of September because he is going to be 75, but were trying to figure out where, so they could get Jason's chair and him there. Are you kidding me? In May, his doctor told us he had 4-6 months (ie: September - November) left. He is near death and they want to yank him out for his grandpa's birthday party? If you want Jason there, why not ask if you could have the party here, because last Sunday he didn't even want to go to church because his butt is in ALOT of pain and his low-air flow matress is more comfortable to him. I mean, he's in HOSPICE!

Some people, you just want to say, get a grip! Put your big girl panties on and grow a pair, because I don't have time to hold your hand through this. I already have enough on my platter, and babysitting you, your feelings, and needs ain't a priority of mine!

I had a pushy lady from the ALSA ask why we weren't going to be in the walk this September or at the Luau they were having, etc... I really can't believe some people.

Some lady called to remind us of an eye appointment for Jason. I told her we had to cancel it. She said, "You don't want to reschedule?" "Why?".... I could have lit the phone up and sent her into next week.

Today I had to call another newbie from our church to help me turn Jason and clean him up from a BM. He is a 70+ year old farmer that has a heart of gold, and at the end of it, seeing the twinkle in his eye of admiration, as he told me I was a real trooper, just totally blessed my heart.

I really couldn't have done this journey without my parents or our church family.

I just hate there aren't services out there that couldn't help with what we need and give our PALS the dignity they deserve in thier last days.

*hugs*

~ Becca