family/Caregiver frustration

[BlueK58]

Hey this is my first post here

I am 25, my mother has ALS and is on hospice but still lives at home. My brother and I quit school and our jobs and rotate caring for her 24/7 with some help from my father who works. she has a dynavox but is too tired to use it most days. We have a method of spelling words for her but it is difficult to explain ( i will if anyone would like to know!) so when friends or family visit we usually have to translate for her. Ok, now i will get to the point lol. Has anyone experienced pushy family/or friends? For example my mother shivers and her teeth chatter due to the als-shes not cold, infact she is usually hot. I know this because im her caregiver. My aunt will nag me saying i need to do something, then i have to explain to her that my mom is ok. or other things like move her pillow when i have it a certain way because my mom requested it. One time she accused my father of not getting my mom enough care or services-which finally sent me over the edge. Our insurance only gives so much and we have looked into everything possible. We sleep in the bed next to her, transformed our livingroom into a big bedroom/ visiting room and more. I am just annoyed that people who don't know much about ALS OR caregiving, feel they can critique when they literally can't be left alone with my mom for 10 min. today an old friend visited my mom and i had trouble spelling with her because she was tired from her morphine and could barely open her eyes. moms friend made a few comments like "jeeze you need to get with the program" and "it's definitely you right now, not her" and my favorite "your brother is better at this". This even upset my mom. How do you deal with people like this? BTW most people are great-just a few who make me NUTS

 

[Barbie]

omg--you poor thing. What the **** is wrong with those people. Listen, there is nothing that can change those kind of bitter, angry stupid people. They are miserable with themselves so they hate on everyone else. I am afraid they will continue their bad behavior even after she is gone, trying to make you as miserable as they are.

the only thing I can suggest is take them aside where your mom is not able to hear and get upset, and tell them off. of course, you do it with a smile on your face! (remember that they are the bad guys not you no matter what they say) if they can't straighten up their behavior, then the should not be allowed to visit. perhaps your bother or your dad can also stand with you as you talk to them, to give it more value.

Be strong, you and your brother have done so much for your mom and she loves you and appreciates you. that is what really counts.

 

[BlueK58]

Thanks so much Barbie! I appreciate you taking the time to respond. That lady had me feeling so upset today, i usually am very level headed but that really hit a sore spot ( i think all caregivers feel they don't do enough even when they probably end up doing too much). And i agree with you 100% keeping my mother happy and comfortable is number one above all! I think I am a pushover when it comes to being assertive with people older than I am because I was raised to be respectful of elders. But luckily i have some great people who are very supportive, positive and helpful

 

[maryhahnward]

Maybe you can say something like "We are so glad you came for a visit today. It really brightens our day. ALS is such an all consuming disease for the person with the disease and those who care for them that visitors help to break up our day. Even though it seems there are things we could better, and that's probably true, rather focusing on that we would love it for you to pay attention to the very needed social interaction today." No one can really say all of that but you could write it out and put it on the door to your house or wherever guests would see it.

You and your family have so much on your plate....I wish I was close enough to hug you!

 

[BlueK58]

Yes, maybe i will do something like that because i was at a loss for words so i just tried to be polite. Later my parents and i discussed it and i felt much better. There was a awesome post my dad found about ALS and families/caregivers. Was basically about how many people readily offer critiques or advice but are not willing to actually DO anything to help. On the flip side i have to say some people are beyond great. One family friend just showed up and mowed our lawn and and did yard work because they knew we did not have time. I will have to write a post about the helpful things people have done as well. Thanks for the support.

 

[ottawa girl]

BlueK,

You sound awesome! So much love in your home. I bet your Mom is very proud of you.

There are so many people who talk before they think or just talk to hear themselves. I really like Mary's suggestion. It's great. Next time, you could reply to such negative remarks by extolling the wonderful thing so and so did for your family! That ought to shut them up. Oh - ask the aunt if she'd like the night shift a few times per week.

As a PALS, I'm in awe of the CALS - you people do all the heavy lifting, with heavy hearts and a light touch!
God bless you.

 

[JamieL]

See, my knee-jerk reply is something like "please let us step into the other room where I do my throat punching to those in need." Ugh.

But seriously, I feel your pain! And also sense the true bonding and love in your home. It sounds like you all have really formed a team and work together to care for your mom.

My aunt, my mother's SISTER, was "the one" in need of a punch. Right after diagnosis, she showed up at my parent's house with all the most dark, horrible stuff she could find on the Internet about ALS. All printed off, stuck in an envelope. Just COLD. And she'd read none of it, I'm sure. Just this bleak horribleness. Her "boyfriend" (in quotes because they are in their late 60s and have lived together for 20 years so it's rediculous to me to say boyfriend) took it from her. He gave it to me outside and said "I read this. I don't think Barb should have it." I looked at it and agreed, as did my dad. So I go inside, just to walk up on a conversation between my aunt and my mom and my aunt was just hounding her about the details of that doctor's visit where she was diagnosed. She asked her twice "what did you do? Did you cry?!" Oh my dad was MAD! He finally said "stop asking her if she cried! What does it matter?!" Good lord she just says the dumbest stuff. Then a couple of weeks ago was pressing her about why she didn't want to go shopping. BECAUSE SHE HAS ALS YOU MORON! SHE IS TIRED! ALL THE TIME! BACK OFF! (this was in my head).

Then there is their neighbor. She is very nice. But she talks all.the.time. And wears my mom out. I mean she'll go on for two hours about her husband's third cousin that nobody knows or cares about. But she brings my parents meals, runs errands for them, asks if they need anything if she's headed to the store, etc. She means well. But she called my aunt and said that my mom was "shutting her out." My aunt said my mom is kind of private anyway and the neighbor was all "no, she literally shuts me out... she won't let me inside the house anymore." LOL! Clueless.

But here is one of those good ones. Our neighbor from where we used to live called and asked if they could visit. This is about a 6 hour drive for them. I'd have NEVER expected this particular person to react the way she has. She took the news of my mom's ALS very hard. But she told my dad "I don't have any expectations. We don't have to spend the night or anything. I just feel like I need to hug Barbara." So and THAT lady "gets it."

 

[BlueK58]

JAMIEL!

I SO FEEL FOR YOU! Some people can only look at things from their perspective, lacking some serious empathy. Sounds like your Aunt wanted to hear your mom say certain things and give her that packet to ease HER mind not your Mother's. Understandable, but not right, its about your mom first...and I wish her and all of you the best of luck. I also think that was unfair to you and your immediate family because you guys have so much to deal with and prepare for. I am sure people constantly ask how they can help but really can't take a hint or might not know how. Feels awkward to tell people what they can do but trust me it helps! Maybe you can send out an e-mail or something letting those people know specific things they can do. Like, watching a short movie. or say your mom liked gardening-if she is too tired someone can put some of her plants in pots for her and move them inside so she can enjoy them. Or just come over and TALK to her about hobbies/old times. Since my mom has entered the end stages i keep a group of select friends in the loop by calling them and explaining how shes been feeling and what she is up for, I also give them time frames of when they can come and how long they can stay because like your mom, she wares out easily! I wish you the all the best and please please please vent to me anytime because i get it! let me know if i can help out in any way!

 

[Andre12]

I feel so bad for your mom . I think you may appoint a home caregiver who will help you evaluate your situation and will recommend the level of care that is required. In home care services offer a patient personal proper care services such as assistance with daily living activities such as eating, toileting, bathing, grooming, transfers, and mobility as required.

 

[BlueK58]

Thanks for the advice Andre12. We have looked into these things and insurance wouldn't help. Sadly, we only would get real help with Masshealth and we did not qualify. We also could not afford to hire someone part time (also were worried about the skill level/compassion of the person in our home) Only option was to ship her to a nursing home, which was not the right choice for our family. I have actually had physical therapists and nurses who have come to the house pull us aside and say what a great job we are doing. My mother has someone sitting in bed next to her 24/7. She has tv, books on tape a dynavox and has friends and family visits about 3-4x a week (plus we usually all hang out/eat dinner in her room). My post was more about feelings of frustration when people who do not understand, choose to point fingers or make assumptions rather than ask, learn or help. It is just difficult to care for all of those things on top of being the gatekeeper for friends, family, appointments, housework and life in general lol. I love my mom and actually enjoy caregiving, Just sometimes i need 20min to shower, or eat. I also need a little positivity my way since I have to be positive and motivated for my mom's sake

 

[JamieL]

My mom has only been to one actual clinic visit since the first time we just met with the doctor. But he mentioned how lucky she is to have a great support system. Then at clinic every last person who came by- OT, PT, dietitian, respiratory therapist, etc. said what a good job we were all doing. The social worker said "well if humor cured ALS you guys would be set!" So that does feel good to be told you are all doing a good job with a horrible situation. It makes me profoundly sad for PALS who have no support. I cannot even imagine. It seems whack to say our PALS are "lucky." But that was before it dawned on me that there are people with ALS who have NOBODY to help them. It makes me sick to think about it.

 

[skipper66]

Hi Bluek58,
You and your brother are a true blessing being there for your mother. You are making great sacrifices to help her and your dad with things. You are wonderful and don't let others bring you down. I admire you and the other CALS on here. Kim

 

[Dallas Redhead]

I KNOW!It can be so frustrating. I'm newly diagnosed with ALS (my friends try to boss me and say: Maybe you should quit work, etc." Duh, I need the insurance! and I can still walk (for the most part!) Anyway re: your post, " My Mom had MS (in bed 23 yrs) total care, but such a sweet angel, always smiling/laughing/giggling...and people would always have their "suggestions" about how to care for her...so I made "Flash Cards"...I'd write "answers" to some of the most stupid/annoying/ignorant questions (re: her care, explain she has spasticity and/or atrophy, so she can't "play cards/drive/swim") and do stuff they wanted her to do, and the Texas heat would TOTALLY wear her out, like a limp-biscuit. (They'd wan to take her out on a picnic in 92 degree weather!) Yeah, right. but seriously: You are doing a wonderful/priceless job of love and care for your Mom. It's kinda fun handing someone a card that kinda tells them "what it's al about". (I got tired of trying to talk and explain - some people just wouldn't get it). You can always say: "Mom needs to go to the bathroom...can you help me with her?" They'll head for the door and you can say: "Don't let the screen door hit you in the "bum" on your way out!" But you're right, there are so many kind people, it makes up for the "ignorant" ones. Best wishes!

 

[designdiva]

That is just awful! We do not get many visitors unfortanately but we have some temporary home healthcare through the hospital right now and although many of the people we have encountered through them have been great help others just seem to bring us more grief. We had a nurse's aid who would come three times a week to help my stepfather with bathing, he would often stay in bed until she came so he wouldn't have to get dressed and undressed again and she would often make comments about how nice it must be to sleep in all afternoon to him and would act totally peeved if he was having a bad day and didn't have the energy to get up and get a bath, it made me furious :evil: Then his nurse does nothing useful and repeatedly tells us he needs to eat more and drink more water... which I do understand, but he simply refuses to do it sometimes and the guy acts like we are neglectful for not forcing him. It is terribly hard when your life completely revolves around caring for someone else all the time and add to that the fact that you always feel you aren't doing enough anyways because no matter what you do you can't make the ALS go away and then to have ignorant people with their comments that clearly aren't well thought out beat you down just a little more. I am so sorry to hear you are having to deal with company, which should be a welcome relief and distraction, add to your troubles and bringing you down.

 

[BlueK58]

JamieL!

Sorry i have not logged on in a while! It sounds like you and your family are doing an amazing job. I think it is awesome that you guys still joke and have a sense of humor! My family copes through humor A TON too, so I totally get it. I think Joking like you did before makes everyone feel a sense of normalcy during a weird time. Also, it must be so great for your mom to have positive pople with her at the hospital!
My dad always says to my mom, "I always teased you before and I will keep teasing you now, nothing has changed" my mom always grins when he says that. What you said about People with ALS not having anyone is heart wrenching i agree...One time when my mom was in a rehab ( for about a month) her roommate was an older woman with different health issues and had NOBODY visiting her (but had 4 adult children). We would see my mom every day and began to feel guilty because this woman was always alone. She loved my dad so he would visit with her too and she and my mom were pen pals for a short time after. Your mom is lucky to have such an involved caring family. You guys are giving her everything by being involved