Frustrated!

[JMH]

Spent 3 weeks with Dad. It gets harder and harder to leave. We were both in tears when I left. I am still trying to get all the equipment we need to look after him at home. He is so afraid of being left alone for some reason and it hurts me that he needs this reassurance. He doesn't seem to realize how much he means to me.
The oxycontin (for pain) the doctor prescribed ended up making Dad confused and he slept A LOT. When we took him to see his Dr. for a chest infection I mentioned this. He said to take him off the drug and see what happens. Well, what an improvement! Turns out that the pain killer is a narcotic; hence the bad dreams and confusion on dad's part. Thank you to whoever mentioned that oxycontin was an unfamiliar med. in ALS treatment. He's taking ibuprofen for the pain and is managing just as well. ( I think I now know how the elderly become like zombies....)
Got a suction machine for dad. It helped a bit, but the phlegm is so thick that it doesn't really remove anything but the regular saliva. That was pretty much a disappointment. Home Care ordered us a Hoyer lift as well. Now if they would just come and show us how to use the darn thing. They have asked us for months if we needed extra help in caring for dad. We finally decided to accept their help so that we could be at dad's in shifts. They were supposed to have someone at the house last Monday. They phoned the Friday before at the end of business hours and said they had no workers available. This was VERY frustrating. I feel like I'm taking one step forward and two steps back!
Sorry for such a long post - needed to vent....thanks for listening.
Merry Christmas and may everyone have a Peaceful Holiday Season.
JMH

 

[hope]

I understand your frustration because my husband has gone through the same thing. What is really important for people to understand is als patients need things promptly. We also waited and waited for things till finally we paid for some of the things ourselves. It is sad but this does happen. I believe we have enough to cope with the illness and it is very important to have the things that make life easier.

hope.

 

[DeeDee]

Hope is right. ALS patients cannot afford to wait until someone gets back to you. We have learned that if we don't have an appointment for the next specialist before we leave the office of the referring doctor, we start calling the next day! We have discovered that what is relayed to the assistants/aides is generally not what we were told during the visit. Don't wait for them to call you. Be persistant and aggressive. Time is so precious, we cannot afford to slip thru the cracks.
God Bless
DeeDee

 

[quadbliss]

My wife Jen and I have learned that you get more with sugar than with vinegar. Although we are persistent with our follow ups, we work hard to cultivate relationships with doctors, suppliers, administrators, and anyone else we might have to rely on in the future. The relationship we developed with our Pulmonologist made all the difference when I was admitted for my tracheotomy.

Mike

 

[CindyM]

I've learned which of their assistants have children, what everyone does for recreation, how far they travel to see family on Holidays - all manner of things. If I had learned this networking skill earlier I probably would have made money selling some sort of product. The Docs especially are shocked when I ask a followup question about the hobby they mentioned at my last visit. These people are my new "friends." My time with them fills up my appointment book sooner and with more frequency than time with my actual friends and family.

I first learned this skill because my Mom, who is in the final stages of Alzheimer's, is in a nursing home and can no longer communicate her needs. But people take good care of her and I let them know I appreciate it. I let them know at Christmas, on Valentine's Day, during national caregiver week, and spontaneously during the year. You are right, Mike. You do better with sugar than with vinegar!

 

[quadbliss]

Because of the close relationships with our clinicians, they are quite familiar with the way we handle the disease and often refer other patients to us. This maintains our connections with the ALS community, and helps boost my feeling of self worth. This is crucial in living a fulfilled life with ALS.

Mike

 

[Al]

My sentiments exactly Mike. We are quite involved with the ALS Society in our area and are referred quite a few new patients that are looking for information on coping strategies and how to deal with this from a patient's point of view. I also spend a lot of time here and on the computer looking for information to help others. It is gratifying. AL.