family/Caregiver frustration

[BlueK58]

Skipper

Thank you for your kind words. I am the lucky one. I grew up with two amazing parents who led by example. They always taught me to give to others and expect nothing in return so without that, I don't know if I would be able to do this. Hope everything is good with you

 

[BlueK58]

Dallas redhead

Can i just say, you have a awesome attitude! I really like you lol! Cards are a great idea because i get SOOO SICK of the long explanations followed by vacant stares lol. You hit the nail on the head-you can explain it to some people 20 different ways and they STILL try to take someone with atrophy/spasms hiking haha. Sorry to hear of your recent diagnosis, you seem like you have a great head on your shoulders and a good attitude. i hope you have a solid support system because you more than deserve it!

 

[BlueK58]

Design Diva,

Sounds like your aid is SERIOUSLY lacking patience, empathy and compassion for you, your family and stepfather. The aid is there to help not criticize. She is there for your stepfather, so acting like he is an inconvenience or bother is TOTAL BS. I would call and report her demeanor and request someone else to come. Showers or baths should be relaxing, not nerve racking. Also, if he doesn't have the energy TOUGH S*&$. She can offer a sponge bath instead or ask if there is something else that needs to be done. If she says it must be nice to sleep all day i would say something like "yeah it's also nice to not have enough evergy to get up and drink a cup of coffee" I have an aid who comes 2x a week for an hour to help with showers. She is BEYOND AMAZING. She talks to my mom and jokes with her. Always positive and smiling, and even offers to help with laundry. You all deserve someone with a compassionate and positive attitude. If she does not like her job then she can find another one

 

[designdiva]

Thank you BlueK, I did call to report her, they sent out a new aid who he likes, followed by cutting his visits from 3 a week to 2 and then randomly sent out a different aid who only spent 10 minutes bathing him and didn't even wash his butt (insert your own creative cuss words here lol) I called and went off on the care agency, what was the point of even sending someone out if they weren't going to wash the areas that need it most?! Needless to say we got the aid back that he likes and are getting along pretty well with her and she takes good care of him. I have found there are a lot of stupid and insensitive people in the world who say dumb things and I try not to take it personal but when your emotional and mental resources are already taxed from the constant care and anxiety that goes along with caring for a PALS, or really anyone who is terminally ill, those kinds of comments are totally inappropriate from anyone who hasn't spent some time walking the walk.

 

[Janie H]

You and your brother are heros for taking care of your mom, I have issues with my family also, I don't want to fight with them,(they don't believe I have Bulbar palsey, I'm newly diagnosed) I nicely told my sister that I was going to keep doing what the doctor says and hope he is wrong. I will not get the second opinion that she wants, I have very good doctors, I guess since I am early in this, I have fasciculations all over especially my tongue and I get choked easily, still going to work, seems like I will have to get worse before they believe I have this.

 

[BlueK58]

JanieH

My heart goes out to you. I hope you get the support you DESERVE. You know your body and what is normal and what isn't...My mom was first brushed off completely then incorrectly diagnosed with Multiple sclerosis that did not present typically, for 3 years. She RAPIDLY declined from a limp to losing all function and then they finally after a stint in the ICU they came back with ALS...For the first year we had no idea what was going on but knew all we could do was support and accommodate her changing needs (she worked as a nurse but it became too hard to even walk so she eventually left). You are not crazy, and you are seeing trusted medical professionals. Stress is the last thing you need. You need support from the people who matter most! You said your sister wants a second opinion but i think she should respect YOUR CHOICES when it comes to YOUR MEDICAL TREATMENT/JOURNEY. Sadly, sometimes getting worse is when people take notice. Maybe they are scared and in denial? Maybe you can talk with them and tell them that this is real for you and what you need from them? Either way i hope you get some answers and some relief. I have not been through this but i'd say trust yourself and your instincts. Come here and talk to everyone because they are beyond kind and helpful!

 

[debra6004]

I can relate! When I first started having problems with walking and falling, I was asked maybe I should pick up my feet higher (duh, I didn't think of that!). Also, maybe exercise or physical therapy might help. Okay, so I tried modified exercise, physical therapy, chiropractor visits, etc. etc. and progression kept on coming. Some people don't know what ALS is, so I would try to explain without crying (which by the way - emotional lability is a problem for me), and in most cases people would say they hoped I would get better. I love my 85 year old mother who lives close by (which has been an issue for years) but sometimes need my alone-time. I tried to explain to her and surprising she took it well. She still calls 2-3 times a day, but now usually call me before popping in (and staying HOURS at a time). I have a lot of great friends who e-mail, FB, call, or check on me often. We had a get-together on July 4th at my house -- which was great but I had to depend on my daughter to help me get my house ready for company, which I know I shouldn't worry about so much now. I think everyone gets it now that I won't be getting any better (unless God does a miracle!).

 

[R9L13026]

I can relate! I would try to explain without crying.

I still can't talk about having ALS without breaking down and crying. Makes it very difficult.

 

[Janie H]

BlueK58 and debra6004 Thanks for the kind words, my sister just doesn't talk about my condition anymore, I didn't go to the family fireworks on the 4th because I didn't want to be a downer or here anything else about lime disease, most of my family have really been good about this, my sis is a hard person who never shares her feelings, I think she is scared because we run a business together and she doesn't want to do it without me, I am not taking her to the doctor with me on the 22nd, I am bringing my sons, I have to do the living will thing. I am suprised at how well I am handling this, I know that I will leave this world when God is ready for me, I always thought that I didn't want to know when my time came but there is a up side to this, I get to tell everyone I love how I feel and they are doing the same, it doesn't matter if I have 1 year or 20, they are going to be happy years, God bless you both,