HI I'm new my father-in-law has ALS

[loreleibesso]

My name is Lorelei my Father-in-law was dianosged with ALS Jan 2006. I'm looking to find some support for the both of us in this terrible situation. I need advice on how to help my hubby through this trying time. Thank you

 

[CindyM]

Welcome, Lorelei. I am sorry this is happening to all of you. Most people say it is a big adjustment and takes time to wrap your mind around the DX. We are here for you.

This is a great place to get answers, support and information. If you have a topic in mind you can use the search feature at the top of your screen, or just ask away. You can start a thread on a topic - almost no subject is taboo no matter how sensitive as long as you don't try to sell stuff - or you can always use the private message feature if you want to have a one-on-one with a member. Glad you found us. Cindy

 

[Frizzel]

Welcome Lorelei

Often ALS and MND's prgress with each person differently. Probably the one thing I would want to share is those of us with MND's are still the same people we've always been on the inside.

I still have all my senses of feeling touch, hearing, sight, smell, taste. My mind is just as sharp as it's always been,,,,ok that may be disputable...still, my brain just can't communicate with my body to move like I use to. My interests are still the same...just making adjustments....for instance, instead of always playing the piano, I listen to more music...books on tape, etc.

Is there a support group for Caregivers in your area? That may be a start. This group here is pretty amazing. I've learned tons here AND although my disease is progressing it's not such a mystery any more.

All the best to you and your family. Frizzel

 

[hboyajian]

Hi Lorelei, I am so sorry your father-in-law has ALS. My dad also had ALS, and I know how hard it is to watch someone you love struggle and suffer. People approach illness differently and have different needs for support. Some need to talk, some need to do, some need time alone to process, others need support groups, etc. If your husband is like me, he needs to be able to be well informed and take some action. Learning as much information as I could about the illness and methods to accommodate increasing disability helped me feel less lost and devastated. There was something I could do to make Dad more comfortable even though I couldn't reverse or stop the progression. Finding the most helpful resources was harder than I thought, even with the internet as I waded through bogus sites as well as genuine ones in my quest for anything that could help. I wish I could give you links to the best sites for information regarding everything from types of neck braces to research studies to breathing exercises, but my computer crashed a few weeks ago and all my bookmarks were lost.
This forum is one of the best ALS resources on the internet. Many of those links were found in posts on this forum. There is a wealth of ideas here also to deal with numerous types of problems, practical support that doctors don't necessarily know about. There won't be links to false hope that just waste your time, and there will be people to talk to who really know your struggle. Has your husband been on this support forum? If not, he might find it really helpful. Just to demonstrate the commitment of people here, I posted on Christmas Day when my dad died, and Al (the moderator) answered me. I was deeply touched that he cared that much.
The ALSAssociation has great information, can get you hooked up with support groups in your area, has equipment lending programs, and organizes fund-raising events for research and patient support. I would have liked to go the annual 'Walk to Defeet ALS' with my dad, but the one near me had just happened when we got the diagnosis. I plan to be part of it this September.
One last thing...My dad's progression started out slow (4 years ago before we knew what was wrong) and kicked into high gear about a year ago. I don't know what condition your father-in-law is in, but you and your husband may want to plan vacations with him, anything you both like to do, or just spend lots of time hanging out at home. The memories of time I spent with my dad are the most precious gift I have from his life.

 

[Al]

Hi Lorelei. It's nice to welcome a fellow Canadian here but we are sorry for your reason for being here. I think just being there for your husband with an extra hug, listening when he wants to talk and crying with him when he needs to cry are some of the important things to help with dealing with this. Knowledge is helpful as well. Being in a smaller city the docs there don't see much ALS so you need to be informed about treatment options. Has your family registered with the ALS Society of BC? They can be a valuable source of help and advice. Take care.
AL.

 

[brooksea]

Hi Lorelei,

So sorry your father-in-law has been diagnosed with ALS.

I would say if you can just be there for your husband by listening and comforting him, it would help him greatly. Often times caregivers have no one that they can really relate to about the horrible process that one goes through when they find out about ALS. You being close to the situation can understand and support. But you will also need help. Please feel free to talk with us on this forum. We will try to help if possible.

 

[sheryl]

Hi Lorelei,

I think we may be in the same boat, somewhat. My mother-in-law was also finally diagnosed in February of 07, but looking back on the last year and a half, we didn't get the diagnosis soon enough. She and my father-in-law are GREAT people and this is something none of us were prepared for. We are having trouble in several areas as I am finding is the case for so many ALS patients/family. My in-laws are very set in their ways and the rest of us are scared to say or do the wrong thing. My father-in-law is the primary caregiver and he is on the brink, Sue is very advanced in her disease, she has lost the ability to swallow, speak, almost her ability to write and her left side is going fast. They have three sons, one of which I am very blessed to be married to. They raised very sensitive caring boys, they are awesome, but we are afraid to cross Dad, he is very sensitive about well, everything. We are at a point where we will probably have to make some tough choices. We are in contact with the local ALS support group and attend monthly meetings, Mom has an incredible doctor...when we can get her to go. I guess my question is how do I get everyone together to understand we are at a crossroads and some tough choices have to be made for the welfare of my in-laws?

Any advice is welcome, I want to help the entire family
Thank You
Sheryl

 

[brooksea]

Sheryl,

It sounds as if your are in a difficult situation with the in-laws. If you believe things need to be changed for the well being of both your FIL and MIL, then perhaps you can research the different options available and chart them out for the siblings and let them approach FIL with the suggestions. I would contact the ALS Assoc in your area to discuss privately the many issues your MIL may have. They can help you formulate a plan for now and future needs.

You will need to let the siblings and FIL handle this. I know from experience in different situations with my in-laws (husband has 5 siblings). You may be looked at as interfering, no matter how loving a family you are involved in. Trust me.

 

[CindyM]

Hi Sheryl, Jimmercat is right on target. I, myself, have been given the exact same advice on more than one occasion but still find it hard to sit by! :-D

The advice to contact the social worker at the clinic is a great start. And perhaps you can find one member of the family who might want to look objectively at one problem-like her breathing, food intake, mobility- just one issue. If you can get them to compare how she is now with how she was a few months ago they might see the need to assess her other issues as well and seek answers for each - one at a time? Just a thought...Cindy