Out of town worriesII.

[bellard]

I hope this is not double posted, but I origianly seem to have posted this to the wrong thread?

Hello,

My, mother who lives in another state, was diagnosed with ALS 1+ month ago. It is the bulbar ALS. In reality she has had symptoms for over a year, but no one figured it out. Now, she has very limited speech, most can not understand her, limited breathing capacity, trouble swallowing, and soem falls. We went to clinic for the testing and confirmation, and I actually saw her degress there, but I had put it all off to the stress of it all.

As luck would have it or not, there is a sibling of mine that currently resides at the home with her, but they are often sickly and needy themselves. As we wanted to have good communication with mom, after much research, we purchased her a laptop, so she can communicate with us children who live in other states. That has been a blessing so far.

It seems that most information we have been seeking out here, is not appreciated nor thought of as needed by Mom, and the children there who are with her day to day. After the 5th fall in a matter of weeks, I called a supply place to arrange for a cane, and walker. It still took 2+ weeks for mom and house to be available to receive it.

In our support group up here, we learned that most people have an ongoing relationship with their respitory technician, and I know mom does not like her v-pap machine, so i inquired if they had talked with their local rep, since the initial visit. no. I offered to call, and was waved off.

a short trip was planned out of state by mom and sibling, and no thought was given to how mom could communicate, so the laptop is being left at home.

mom says she can talk on the cell phone. yes she can, but we can not understand 85% of what she says.

We are very worried about her, and try to seek out the safety methods, so she can maintain her indenpendance, but she and they, want little to do with it, so it seems.

We try to stay upbeat and positive but sometimes I worry how depressed mom sounds in her coorespondence.

I would be interested in others who deal with loved ones in other states, and what they may do to help ensure, that they are contributing to the enjoyment of life for the out of state affected love one.

Thanks

 

[Frizzel]

Mom

Our daughter who lives out of town struggles with not being with me, too. I don't have ALS but have had PLS for 11 years and am now in a power assist wheel chair when I leave the house. I don't know how old your mom is but I do know as a 'mom' I often try to be strong for my kids. From your mom's point of view, I'd rather try and fall on my face than to sit around waiting for the disease to completely take my independence.

What I've learned is to be interdependent with family and friends. That way, I make plans with how I will communicat and get around without exhausting myself or others. I am going to visit our daughter, out of state, for mother's day and she insisted on me using my 'chairiot' as I call my chair when I come. She also asks that I use an ear piece for talking on my cell so I'm not trying to open my cell phone and drop it.

I listen to our kids concerns...they have the right to tell me how what I do affects them and then we have to decide whether or not we'll go ahead with the plans.

For me, when our kids say something like, "Mom, if you come to visit, you will need to use your chariot because it will take the stress off us if you spasm or cramp up or your legs shut down or even for us all to get around at a faster pace." Upfront communication without trying to control the other person's reaction can be unsettling and we have chosen to be sensitive to each other's requests.

We need to be strong for each other in the reality that this is a serious disease that we all are going to continually be making adjustments for.

I call the airport ahead of time for a wheel chair since they won't let me take mine on board. They take me all the way from when I check in to the terminal and back to get my luggage and chairiot. Much easier. I do take my chairot pad with me on the plane though. I also take a small flannel blanket for over my legs and a warm scarf for my neck. I use a pouch for my cell phone and wear an ear bud to talk from. I also text message from my phone with the numbers of my closest family and friends already dialed in. If she needs help with that her cell phone provider can help her.

My brains' opinion is, if you can't understand your mom on the phone, let her know that...if she chooses to not take another way to communicate, you have at least given her the option to do so by also taking her lap top.

This is my prayer for you...May you be granted the serenity to accept the things you can not change, the strength to change the things you can, and the wisdom to know the difference.

All the best!

Frizzel

 

[CindyM]

I try to listen to my adult children's concerns. I find they are resourceful and caring people, and even accepting of the fact that their Mom is more of a risk-taker than they usually are. Unless something doesn't make sense to me, of course, then I do it my way. :shock:

The real issue for you must be that you have so many worries about her health and safety since you are so far away from each other. We actually have some experience with caring for a very ill relative over a long distance. If you would like some tips, send me a private message and I'll share what worked for us. Cindy