long distance "caregiver" (adult child)

[lisaann1170]

My father was diagnosed with ALS last month and while I'm fortunate to have the summer off (I teach), I fear having to return to work mid-August. I've spent much of the last few weeks travelling between my home and his (3 hours one way) with my four-year-old and my wonderfully helpful husband.

Is there anyone else here with a close family member for whom you're trying to care across a distance?

So far, I've coordinated and attended all of his medical appointments, handled the VA paperwork, and worked with the ALS Association to gather resources. I don't know what else I can do from a distance, particularly when I need to go back to work.

I would love to know what I can do to help. I call everyday, but some days, I think it's a struggle for Dad to talk. He's tired and talking is increasingly more challenging.

Aside from practical assistance and simply being social, I find it hard to be so far away when he really needs me. It's emotionally painful.

I'd love to hear others' experiences and to know if others are out there in a similar situation.

Thanks!

 

[DgtofTNfan]

I can't really answer your question as my parents live next door to me but I just wanted you to know that based on the amount of paperwork with the VA, ALS appts, medications, equipment, modifications, etc. that we have been working on, I can only imagine what it must be like to help coordinate that from 3 hours away. I really feel for you.

My first thought is I am hoping you have a power of attorney and/or healthcare surrogate on file with each of the primary providers in case you need to make calls to address issues that may arise - especially if your Dad is having difficulty talking.

I will add that my Dad was diagnosed in Feb 09 and things have finally leveled off so that we have had a reprieve from appointments and paperwork for now and I hope the same happens for you.

Sincerely,
Dana

 

[asantiago]

When my mom was diagnosed, I lived 10 hours away from her. My instant reaction was to move home after debating the reality of it I decided not to then just a few weeks later decided I HAD to move to be close to her no matter the consequences. She really needed me and I needed to be with her. I made a temporary move and took my 18 month old son with me leaving my husband behind. Unfortunately mom's ALS progressed so rapidly she only lived 4 months after diagnosis which is part of the reason I made it a temporary move. In the midst of arrangements to sell the house and find new jobs, we realized she just didn't have much time and decided for me to just go by myself for as long as I needed to be there.

To me I just had to be there, it was more about being there to have time with her than it was about the medical and the paper work. Don't get me wrong, she really needed me there for that too but I wanted to spend every second I could with her because it is time you can never get back. Additionally she required a lot of hands on care so it was mandatory someone be with her at all times and I'm grateful for having the opportunity to have been that person for her.

As the other poster suggested make sure you have power attorney, both medical and otherwise. I'm so sorry about your Dad's diagnosis I all too well remember the emotions associated with the whole process. I hope you come up with a solution that works for your family.

 

[indigosd]

My daughter lives very far away but she phones me every other day and she gives me [the CALS] incredible support! When we need her, she will come and help me with the physical care and she emails DH every other day because speaking on the phone is hard for him. She also writes little notes that come in the mail and is 300% available to her baby brother [12 years old] which has helped us all beyond imagination! The letters and cards are such a comfort for him and he rereads them all the time. :]

 

[KinzaDAF]

My father ( and mother ) lives 7-8 hours away from me. ( My two sisters live much closer but have very busy lives. ) At this point, Dad can still do most things, but eating/swallowing is extremely difficult ( Lots of things come right back up and into a napkin I guess. ) and his speech is unintelligible. My mother is his primary caregiver. Right now, things are mostly manageable for her, but I worry about how things will be as time goes on and this awful disease progresses. I am thinking that maybe at some point I will want to temporarily move nearby to provide help and support. ( I am an R.N. too, should there be a need for any type of skilled care. ) Everyone's rate of progression seems to be different, but can anyone tell me at what point my ( moving there ) help might be most needed?

Debbie

 

[KinzaDAF]

p.s. Dad does not yet have a PEG tube. I have been told that he is getting thinner. Sigh. He has his first "real" doctor's appointment on September 1st, and I am anticipating that the doc will want to make arrangements to put a PEG in. ( From all I've read on this forum, I HOPE this is done SOON. ) ***He has not had one doctor who has been following/coordinating his care since he was diagnosed last November ( Symptoms started July 2008. ), but *has seen a couple of speech therapists. Dad is finally taking meds to help with some emotional lability...I think a local G.P. prescribed these, and a speech therapist is sending someone over to show my parents some communication devices. I am very glad that Dad is finally going to see a doctor who will be *his doctor now, and am hopful that Dad will begin getting some of the help ( like the PEG tube ) that he needs.

Debbie

 

[KeeKer]

You should get him onto a computer soon. Is it bulbar? My brother used the computer to keep in touch with friends and family. He also used it later on to talk with the family at home.
Colleen

 

[KinzaDAF]

Yes, Dad has bulbar onset. He has always hated writing and now isn't too eager to use the computer or to try texting on a phone either. He has resisted writing anything down ( until just recently, now writing just a *few things down ), preferring to try and talk. But, his speech is unintelligible. We'd *tell him we couldn't understand, but he'd just keep at it. It was so frustrating for us, and I'm sure for him. Did/does he not "hear" how he sounds when he tries to talk? Oh well. My sister tried teaching him to send text messages but he returned the phone after a short time, not having used it at all. He very rarely will send a message on the computer and I can't *remember when the last time I got an e-mail from him was. He HAS to start using SOMETHING to communicate! I think my mom told me that someone is going to be bringing some different communication devices over for them to look at. I do know they have been loaned something called Polyana, but my parents haven't figured out how to use it, even though they have the manual for it. Hopefully someone will be able to go over and help them figure the thing out.

Debbie

 

[asantiago]

Debbie,
Our local hospital had a speech therapy department that helped us a TON! They may be familiar with the device your parents have been loaned. If they aren't they probably have contacts with the vendor of the device. The device my mom had was super easy to use once it was set up properly. She only had to push one button to say a complete sentence. We just programmed in lots of things for her and categorized them, basic needs, general conversation, special pages for different people, like there was an area for things she'd say to my sister tailored with her kids names, and things about her job, for me she had a different "page" with specifics for her to talk to me about.

It seemed overwhelming at first but once we knew how to use it, life became much easier. Have you check into what devices insurance will pay for. Good Luck!

 

[Valerie]

Hi there.
My mom was also 3 hours away. For the summer I too travelled every weekend to help my Dad in caring for my her. I totally understand the "painful" phone conversations and feeling so far away. I was to the point of anxiety over the phone calls when I was home as I could tell how difficult it was becoming on Dad and wanting so badly to be there for him. In some small way I got comfort from knowing that I helped extend her time at home and allow Dad some reprieve of the difficult task of sole caregiver.

It sounds like you have done so much and been very helpful for your father. Are there other family members closer to support him and his care? It's a big burden to take on with constant travel especially with a little one... (my youngest is four also).

One thing that I started to do was to try and take on the tasks that were possible at a distance. As my dad was less computer savvy, I created e-mail contact with the home care support people medical staff, etc. This helped lessen the burden for my dad and got a lot of the questions "to ask at the next appointment" answered much sooner. As well I have started sending out a weekly e-mail to my mom's friends who she is no longer able to connect with. This way they know how Mom is, where things are and what the next plan is. This saves my dad from telling everyone the same story every time another person calls. They have shown great appreciation for being in updated.

We also thought about this idea... coordinating support from afar... contacting all those people who what you to know "how I can help". An e-mail perhaps (so the pressure isn't so direct) of things that need to be done around the house to help support your Dad and his caregivers. Maybe this way someone will sign up to cut the lawn each week, make a meal for a certain day of the week, get groceries... In the same way that you being there does, this effort from a distance can be extremely helpful also.

My parents were very supportive of me and appreciated how hard it was to be torn between them and my own family. It helped me to know that even though I wanted to be there every weekend, that it just wasn't realistic and that was okay. The phone calls, the artwork mailed from a 4 year old... these were also helpful, to Mom's spirit.

It was easier for me to take on the tasks and keep myself busy in any way with her care. I felt more in control of the disease. Or maybe it's because I keep it on a physical level and not process it on the emotional side so much. Back to the phone calls again, what was most prevalent while talking to her from far away was the disease and how our calls had changed because of it. Then when I would see her, it would all go away. Again it was just my mom- the disease was secondary.

In preparing to go back to work full time , my sister and I had planned to travel alternating weekends. This didn't come into play as today we moved Mom to a hospice twenty minutes from my home. I am so thankful for this opportunity and for her to be receiving the type of compassionate care she needs and deserves. Here the support system is greater for her and my family, we are blessed to have her close again.

I hope I have helped you in some way. Our experiences seemed to be quite similar- I think you and I connected before the summer also. I wish you strength and continued support. You are doing a wonderful job and I'm sure your dad is very proud of you.
Good night.

 

[pamnandy]

Hi friends,

I've had a thought brewing for a few days since I read some of the recent posts on here, referring to your loved ones who have this horrible disease and you being too far away to help in any way.

I'm friends with a PALS whose mom lives 2,000 miles away. The one thing she has done for him and his family is open a communication system to enable them to keep in touch with friends and family from everywhere. The mom calls his wife for an update, or receives updates from him via email, and every few weeks she posts a blog for the rest of his friends and family. They in turn can add their thoughts and post responses which in turn are passed to him. There are several free websites out there if you are interested in starting one. The site that this PALS family uses is called "The Caring Bridge." Just google it to read about it.

As a caregiver who was "in the trenches" I barely had time or energy to keep updating all those who wanted a word. I would have embraced help like this, and it's something that truly you could do from a distance.

Blessings,
Pam

P.S. I posted this mistakenly on another thread, the "Caregivers to spouses" site. Oops! So I copied and pasted to where I really wanted it to go....here!

 

[Katie C]

Pam, I too set up a blog to keep friends and family updated. I wasn't thrilled with Caring Bridge just because I thought they were a little heavy handed with their requests for support. Not sure if I can post the url of the one I'm using, but if you google blog sites, there are a number of free sites with easy templates to get anyone started! My brother in law even prints out the updates weekly and brings them to Glen's mom. It's a huge help.

I also went to an online print place and had "business cards" made up ... they have the blog url and my e-mail address on the front, and on the back ALSA, UCSF and Forbes Clinic site addresses. This way we're not fumbling for a pen to give someone the website!

 

[pamnandy]

Having cards printed up is an excellent idea! It was mentioned on another thread as well but you've expanded the thought to include great information!

 

[lisaann1170]

Follow up...two months later!

After much debate, my parents decided to move closer to me. They now live 15 minutes from my house.

For us, the decision came down to accessibility to (1) medical care, and (2) assistance. Dad's hometown neurologist asked me very frankly to transfer his care elsewhere as she had never worked with an ALS patient. That was an alarming request! Clearly, he needed better care options. They lived in a smaller city, so there were few local options. They now live near a VA facility with an ALS clinic and similarly, we have an amazing local branch of the ALS Association. And, while my mother has two sisters in their hometown, neither was able to help Dad with the care he needs. My husband and I are willing and able to jump in as needed now that my parents are nearby.

We *agonized* over their decision to move. Their house had been for sale for 9 months, and once it sold, it was a sign (for me, at least), that they were meant to be here.

I've been able to coordinate Dad's health care much better, I've attended all of his appointments, and I really value the time I have with him and my mom. Some days, Mom, as the CALS, needs more support than Dad. Now, I can give her a reprieve so she can leave the house to shop (or whatever) while I visit with Dad.

I'm so, so, so happy that they're here!

 

[asantiago]

Lisa, that is fantastic news!