Damn Damn Damn..

[mlsmich]

t's been awhile since I posted but tonight I needed to share my thoughts. My best friend was diagnosed about 2 yrs ago with ALS, muscle onset. She is now totally non weight bearing and her left arm is pretty much useless. She still looks great, even has gained weight. She eats,drinks,talks all very normally. She is a PT but retired after her diagnosis because she struggled with her balance etc. Now she sits in her lift chair most of the day, too exhausted she says to do anything. She watches TV, plays on her Ipad or visits with the many friends who stop in. So why am I so frustrated with her? I want her to do more, go out with me to the shops or movies or lunch like we used to, I can drive her van, she has a power chair. Her comfort zone is at home. It makes me so sad. Yes, I know, it's not about me but then why not? I love her so much, our children have grown up together, our husbands are friends, and 30 years of friendship is a long time. Am I grieving already? I think so. Can I fix anything? Well we all know the answer to that. I can do her hair, give her a pedicure, clean her closet but can't make her better. Damn! Thanks for listening..I guess I just needed to vent.

 

[ottawa girl]

30 years of friendship is to be celebrated. You are a loving (albeit frustrated) friend and you sound more like sisters.

It's too bad your PALS is unable or unwilling to go out - especially since she has the necessary equipment at her disposal. So many PALS are stuck at home... wanting to go out.

From this PALS perspective : Somedays, I'm like her... just want to stay in my red recliner. Don't feel like letting the world see me in my current state. Somedays the fatigue is oppressive. Somedays it's the sadness keeping me indoors. Somedays it's the pain. Since I started taking an anti-depressant, I am more energetic - though - I do need a swift kick in the butt at times! But I never regret an activity afterwards ( even if it takes two days to recover). So what if I can't apply make-up or have my hair just so? Once I let go of silly shallow concerns - it changed my outlook. Maybe your PALS needs to change her outlook. Maybe she fears leaving if she is on BiPap.

It's not just about you - it's about both of you. It's about savouring every moment of your relationship and having no regrets. I hope she hears you. You're a good friend - and if she decides to stay put after all, I'm thinking you'll be there anyway!

 

[skipper66]

I must comment that I would love to have such a caring and loving friend like you. She is so lucky to have you. God bless you. Kim

 

[AfraidButNotAlone]

Let her take the lead. Just continue to be there for her

 

[zoohouse]

You sound like an exceptional friend, bless you. I am so sorry that she is uncomfortable going out, as it is so good for her. I am blessed that Tim absolutely loves going out, shopping, hiking, or just for a car ride. He has a specialized wheelchair with an outdoor package, that allows us to do rougher terrain. We have had several "adventures" but have had so much fun. Tim gets a lot of attention when we are in stores, about his wheelchair, and then the topic of ALS comes up. He is a great spokesman, and actually enjoys the attention. Pride sometimes is the culprit, like some women would not be caught dead outside of their home without their hair and makeup done. Tim did struggle with that a bit when he had to start wearing lambskin foot braces, but he rocks them now. I thank God every day for Tim's amazing attitude, and sense of humor. Have you asked her why she doesn't like to go out, and how you can help her deal with it.
Paulette

 

[WellsRuby]

I'll tell you what my husband says to our friends when they ask what they can do and he will tell them to stay close in heart.

 

[Santa joe]

We all grieve for the person we once had but are so thankful for the loved one we still have. It's ok to be mad.

 

[AKjo]

My husband also chooses to stay home except for doctor's appointments. I have read on here about so many people who enjoy all sorts of activities, but Gary is not one of them. He maintains a wonderful attitude about having ALS, but prefers not to leave the house. He participated in a clinical trial in Washington which we traveled to about 10 times over about a 10 month period, but since it completed about 17 months ago, we have stuck pretty close to home. We have always been "home bodies" but not quite like this! I still offer outings to go for a drive, out to eat, or whatever, but he says no and I have to respect that choice. Once in a while he requests that I bring home a special meal from a favorite restaurant... maybe you can share with your friend by doing that, or maybe taking a popular movie over and watching it together. I'm sure that simply your presence is appreciated and treasured by her.

PS: Feel free to come clean my closets any time you want!

 

[cervus]

I'd like to express what Elaine said. My husband liked to go out when we did but was also content to be home. Trips out were enjoyable but soooo tiring too. You're a great friend and of course you're mourning your friendship. This is part of this very difficult disease. Keep being there for her and being her friend. Yasmin.

 

[Katie C]

You don't mention what your friend's level of cognitive involvement is. Even for someone with the very early stages of dementia, breaks in routine can be frightening. Just try to be aware of it, as current studies show that nearly 50 percent of PALS have some level of cognitive impairment.

 

[SMP51]

.....when he had to start wearing lambskin foot braces, Paulette

Paulette can you tell me more about these? their purpose and such?
thanks

mismich I know exactly how you feel! they are valid feelings that are hard to let go of. but as this disease progresses I look back and see time that was wasted being angry/frustrated...big sigh

 

[sallyb]

I think like Paulette i would have a gentle probe into her reasons for staying home. All you can do is tell her that you want her to not miss out by being at home, to do things outside the home while she is still relatively well & that you can support her in these activities. I know where you are coming from though - i feel like we missed a lot of opportunities when our PALS chose to stay home after the diagnosis & now it is so much harder to go anywhere (with chair, toileting etc) even if she chose to. It is really frustrating. I wonder if your friend having been a PT & knowing whats ahead (has she treated any aLS patients, the resp care/swallow can be distressing) is a factor at all.. If her mood is ok & she is still staying connected with all her friends visiting then all you can do is offer trips/activities now&again but it is her choice. And of course you are devestated & grieving.

 

[mlsmich]

thank you all for the encouraging words..your support is immeasurable. Today we are going out together and even having lunch with our husbands at a restaurant..treasured moments.

 

[zoohouse]

Paulette can you tell me more about these? their purpose and such?
thanks

They are a lightweight brace that keep the foot in a flexed position rather than down in a pointed toe position. They are lined with sheep skin to protect the foot from pressure sores. They also have a "kick stand" that stops the foot from flopping sideways. Tim wears them day and night, because his feet near his ankles ache if he doesn't. Of course I take them off at least 2 times a day to do ROM. He wears his compression stockings in them during the day and bare feet at night.
Paulette

 

[AfraidButNotAlone]

thank you all for the encouraging words..your support is immeasurable. Today we are going out together and even having lunch with our husbands at a restaurant..treasured moments.

Always be thankful for the little things, for it is the little things that amass into bigger things.