Staying positive but definetly overwhelmed

[Erika]

Hello,
..... I'm not sure where to begin. I've never written or have been part of a support group, but I know I need advice and maybe vent a little. My name is Erika and my mom was diagnosed with ALS last June. Her symptoms began with her foot dropping about 2 1/2 years. Her symptoms "stayed" on her right leg for almost two years. It wasn't until last January the it went to her right hand and the her arm. I kept hoping it was just a pinched verve, or even a stroke we were unaware of. I kept telling her (and my self) that with some effort and therapy she'd be back to normal in no time, but by early march and after many tests and a really bad neurologist, I was sure it was bad. Her speech had changed. Two neurologists and more test later in june, she was using a walker and a wheelchair for far walks. Her memory seemed off too. My siblings already knew and a sister flew down to be with us the day it became official. I'll never forget their face. Pure devastation. Devastation and fear. We cried and hugged, but my sister and I remained strong for them and told them we'd be there for them. And we have, in our own ways. I'm the only one of 4 sibling living close by. My dad and her live on their own (for now) so he is the primary care taker, but I've taken them to every appointment, medical test, therapy. My sister is able to fly down every now and then for a few months at a time. It still overwhelming. My other two siblings aren't able to be here as often or as long due to work and illness for one of them. We've stuck together and are making the best out of it. We want to take care of her, take trips, make memories and take advantage of the time we still have. Still, I can't help getting upset. We're trying so hard to help her be comfortable and make the best out of this situation but nothing seems to work. She isn't at a stage where she has accepted this yet I think. She has breathing difficulties and is on her wheelchair mostly now. Yet, she won't do her breathing therapy because she doesn't like the way it feels or use her bipap at night because she can't sleep, eventhough her insomnia has her awake most night anyway. She has a harder time eating now too but eats poorly even if she is hungry. Has she given up? Is this a phase? How do we help her out of it??? My dad is tired, and has some hear issues. He was given a mood stabilizer for anxiety. He is not much of a talker either so although we talk, he doesn't say much. He worries me, but my mom refuses to move in with me and my family and my dad want to do what will make her happy. She doesn't want to be a burden even though we've told her over and over she won't be. I want to take care of her and it would actually make it a little easier since we live about half an hour away from each other. We're considering helping them move back to Mexico. Friends,two of my siblings live there and 95% of our family who live close by or at least in the same state. Her doctor said it would be a good idea if we did, since family and the emotional support is something that'll really lift her spirits. It also makes more sense financially, but my sister can't travel for too long due to her illness. So that would mean she'd probably. never see her again. If she stays, my sister and family would move here at least temporarily and all my siblings would get a chance to say goodbye. But....I don't know. I'm sorry. This went on for too long and it's all over the place. So much more has come from this good and bad, but I'll save it for another time.

Any advice, experiences, thoughts are greatly appreciated in advance!!

 

[SKlocinski]

I know exactly how you feel. My husband, Tom, would not use his bi-pap. He had a feeding tube but would not let me feed him enough to sustain life. It is very hard to see someone you love getting weaker and weaker, especially when they don't seem to be doing the things that could at least help them have a better quality of life if not a longer one. This was very difficult for me because I am basically a control freak but I finally came to the realization that Tom was "driving the bus" and that the choices were his to make, even if they were not the ones I wanted him to make. In the end, he did it his way. My only consolation is that he passed away before he suffered all of the indignities associated with ALS. He still had some function in all of his limbs and was still able to walk around the house until the day he died. He did pass peacefully in his sleep, so that is some comfort. In the end, I stopped trying to make him use his bi-pap and take more nutrition and to make his own choices without me fussing at him.

 

[JimInVA]

Erika,

I am frantically packing to get ready for a trip with my PALS. We have a dear friend, first introduced through these forums, who is flying in to spend a long weekend with us. We've decided to spend the time watching the Atlantic ocean from the surf's edge and I anticipate joyful strain to both tongue and ear from the excessive kibitzing that will compress time to mere moments. With that having been said... and with the hope that you will understand that time here evades me for the moment, let me say this...

Thank you for posting. The first post, often, is the most difficult one to make... for so many reasons. But you not only did so, but also survived the result of that ENTER key. It is... ALL OF IT... extremely overwhelming. But there are many of us here who are willing to share our experiences... not to tell you what you need to do, but to share what has (and what has not) worked for us. With a bit of trust for this group you have only begun to meet, you will begin to understand the course that your own path must take to provide the care you are so determined to give. It may not be an easy path and it may change directions often... but it is a journey that you will not be making alone.

I hope you will not begrudge me the lack of time I currently feel... but will accept my welcome with all of the warmth and care with which it was intended. I'm sure that during my weekend away, you will hear from many of the other fine PALS and CALS that make these forums home for so many.

Again, thanks for writing. Keep us informed and ask away. You've much to learn from us and we'll all learn from you.

My best...

Jim

 

[Nuts]

Erika, welcome. We do understand the terrible choices you are already being asked to make, and you will receive honest feedback here.

Ultimately, the choices must be your mom's. It's very difficult to accept this when the one we love seems to be making choices that will shorten his or her life, but the quality and length of that life with this disease...well...we must give our PALS all the control we can because it is hardest on them.

It sounds like you have a very close knit family, and that is a blessing. Caring for someone with advanced ALS is very demanding, and the larger the support system, the better.

Where would your mom rather be: here or Mexico? As difficult as it would be for your sister to say goodbye early, your mom's needs and support available to her must be the first considerations. If she were to move in with you, how many people are available to care for her? Will you have the resources for outside caregivers? Those are just a few other things to consider.

If you mom goes back to Mexico, can you Skype or FaceTime with her or the people caring for her?

I wish there was a good answer. There never seems to be one with this disease.

Hugs,
Becky

 

[Erika]

Thank you Sandy and Jim for your response. It's hard to open up without feeling judged or risking getting shamed nowadays...but I need advice and to get things off chest sometimes. I don't want to overwhelm my siblings who are so far away and I know my husband is really trying, but like me and being the problem solver that he is, this hasn't been easy for him either. We're educating ourselves as much as possible, but nothing beats experience. From the posts I've read, I'm glad I found you all. I look forward to learning from you all and to hopefully be of of help down the road.

We're giving my mom the wheel and letting her take charge. The problem were having is she doesn't want it. She won't even touch detain subjects. I know it's all pretty new, but there are things that need to be decided or at least considered. Such as feeding/ breathing tubes. Her lungs are getting weaker and we don't want her to lose out on options. I hate seeing her so vulnerable!! So afraid to face this...especially when all my life I've known her to be strong and independent.
One day at a time I guess. Have great trip Jim!

Thank again!

 

[Erika]

Erika, welcome. We do understand the terrible choices you are already being asked to make, and you will receive honest feedback here.

Ultimately, the choices must be your mom's. It's very difficult to accept this when the one we love seems to be making choices that will shorten his or her life, but the quality and length of that life with this disease...well...we must give our PALS all the control we can because it is hardest on them.

It sounds like you have a very close knit family, and that is a blessing. Caring for someone with advanced ALS is very demanding, and the larger the support system, the better.

Where would your mom rather be: here or Mexico? As difficult as it would be for your sister to say goodbye early, your mom's needs and support available to her must be the first considerations. If she were to move in with you, how many people are available to care for her? Will you have the resources for outside caregivers? Those are just a few other things to consider.

If you mom goes back to Mexico, can you Skype or FaceTime with her or the people caring for her?

I wish there was a good answer. There never seems to be one with this disease.

Hugs,
Becky

Hi Becky,
We're still learning but definitely are trying to give her her space and time. In regards to my sister, we did have a talk and she understands that she may have to be the first one to have to let her go. It's more my mom's concern. My sister has renal failure, so when my mom was diagnosed, one of her first sentences out of her mouth were, "who's going to care for Jessy when her transplant becomes available? I'm supposed to be there for her." That was tough, but we've told her she would be OK and that she needed to think about her self right now. Not sure how she's doing with that.
She doesn't know where she wants to be. But yes, fb and Skype would be a great way to stay connected to . We're hoping they'll take a trip there soon and feel things out over there. I know my siblings and family are dying to see her so, I hope it's a positive experience. If she decides to stay here, my sister would move here to help out. We don't have many hands to help here but I'm looking to see what options we have.
Thank you

 

[affected]

So sorry to welcome you to the family Erika

You will not be judged here, so let go of that fear.

You have already been given some wonderful responses, I hope these words are helping you.

My husband had bulbar onset ALS (started with speech and swallowing). He also had FTD which is a degeneration in the brain that really affected his personality and ability to make decisions.

I learned to accept that this is always a terminal disease, and instead of trying to talk him into what I felt were the right decisions, I let go and let him make the calls without judging him. I would ensure he was presented with all the information he needed and even though he had lost the ability to weigh up cause and effect, I was not going to just take over what was left of his life.

Doing that was not easy, so I really feel for where you are at as you watch your strong mum become so dependant and not seeming to want to discuss or make the choices you want her to make. For me, that side of things was harder than watching his body declining. Still, I have no regrets, I know that I supported him and he did things his way. There were no guarantees that had I made choices for him that he would have lived any longer, and more importantly would have lived any better. If he had lived longer maybe he would suffered even further decline and been even more miserable.

So you can rant here, we will give examples of our own experiences, and then you will make your own decisions and we will support you. We will often ask questions to help you work through what you are concerned about.

I am so glad you care enough to be there for your mum, sadly this isn't always the case. You will never regret a moment you spend with her, regardless of whatever living arrangement decisions are made, or supportive therapies. Just being there and loving her becomes the biggest gift you can give her.

 

[Narrowminded]

Welcom Erika,

So very sorry you have to be here. The others have already said so much. My husband, Brian, did decide to get a trach, vent and feeding tube. You can do any of those or none. It's a personal decision that everyone has to make.

Should your Mom decide to Vent, make sure you have lots of help. The care isn't necessarily difficult, just very demanding and she would need someone with her 24/7.

If you ever have questions, I can give answers from a Caregivers perspective, but a gal here Diane H, who is a PALS and has chosen the vent can give her side. She is a wealth of information.

Take some deep breaths and as others have said, share away here, absolutely no judgement.

Hugs,

Sue

 

[Erika]

So sorry to welcome you to the family Erika

You will not be judged here, so let go of that fear.

You have already been given some wonderful responses, I hope these words are helping you.

My husband had bulbar onset ALS (started with speech and swallowing). He also had FTD which is a degeneration in the brain that really affected his personality and ability to make decisions.

I learned to accept that this is always a terminal disease, and instead of trying to talk him into what I felt were the right decisions, I let go and let him make the calls without judging him. I would ensure he was presented with all the information he needed and even though he had lost the ability to weigh up cause and effect, I was not going to just take over what was left of his life.

Doing that was not easy, so I really feel for where you are at as you watch your strong mum become so dependant and not seeming to want to discuss or make the choices you want her to make. For me, that side of things was harder than watching his body declining. Still, I have no regrets, I know that I supported him and he did things his way. There were no guarantees that had I made choices for him that he would have lived any longer, and more importantly would have lived any better. If he had lived longer maybe he would suffered even further decline and been even more miserable.

So you can rant here, we will give examples of our own experiences, and then you will make your own decisions and we will support you. We will often ask questions to help you work through what you are concerned about.

I am so glad you care enough to be there for your mum, sadly this isn't always the case. You will never regret a moment you spend with her, regardless of whatever living arrangement decisions are made, or supportive therapies. Just being there and loving her becomes the biggest gift you can give her.

I want to call her doctor about some concerns I have with her memory and behavior. She has very hard time sleeping through the night, so this could totally be what's causing it, but how did you know your husband had FTD? What symptoms did you see?

I've noticed her memory and decision making skills have changed. She has a difficult time coming up with the word she want or pronouncing it. This has been since before the diagnosis. As time has passed, I've noticed that although she's avoiding the important decisions, she is picky and wants control of just about every thing and else. She's losing so much of her independence that I get that she wants to have and keepsome sense of control around her. Recently it has gotten worse. I also feel that she's working through her illness and frustrations. Maybe going through the angry part of the process....some of her comments too are a little off. Like wanting to do things to do or purchase things that she can't or won't be able to use now or down the road. Also she seems to forget that this illness is and will continue to progress. My other sister thinks it's just her being her stubborn self, but I can't shake that feeling that something else is happening.
Thank you so much for your words and encouragement!
-Erika

 

[Erika]

Thank you Sue! I will look in to it and keep you posted on what she decides.

 

[pittsburghgal]

Hi, Erika, and welcome. You will find a great deal of support here and good information.

It sounds like your mom has a good deal of support from you and your family, which is wonderful. Visit here any time you need support.

My husband also was unable to sleep until he started using the bipap every night. Now he is sleeping well. It did take some getting used to at first but if your mom would try using it each night, it may help with the insomnia.

Sharon

 

[affected]

You are so right there Erika - if she is not sleeping, and should be using bipap the lack of sleep and build up of CO2 will do a lot to her personality and decision making abilities.

The studies now say that around 50% of PALS will experience some degree of degeneration in the brain. It's like the way their body wastes away except that it's the person they were and their capacity that is wasting. What part of the brain and how much wastage happens will dictate the changes you will see.

My Chris had pronounced FTD with complete change in personality - paranoia, rage and withdrawal.

You are also right again that she is trying to cope with this diagnosis and with the constant losses. ALS produces a situation where you suddenly lose all control, so even without brain involvement PALS often become quite controlling as they grasp for something they can control. I think that's pretty normal, but if you have a good relationship you can usually work through that with them.

 

[FamilialALS?]

Sorry to welcome you here Erika. I was my mom's primary caregiver. Prior to symptoms she was fiercely independent. Mom had all the hallmarks of FTD. If you use the search function on this forum you can see some previous threads here that describe the behaviors and patterns and you may see some parallels to your mom. Tillie gives a lot of insight to the condition.

Good for you for taking such care in trying to figure out what is best for your mom. You will never regret the time you spent caring for her.

 

[Erika]

Thank you! Yes, I hope she continues to try using it during the night. As of right now, she'll only use it before bedtime and once or twice a day for about 1HR when she feels very fatigued. Also cramp and leg pain are what wake her too when she's on one side for too long.

 

[Erika]

You are so right there Erika - if she is not sleeping, and should be using bipap the lack of sleep and build up of CO2 will do a lot to her personality and decision making abilities.

The studies now say that around 50% of PALS will experience some degree of degeneration in the brain. It's like the way their body wastes away except that it's the person they were and their capacity that is wasting. What part of the brain and how much wastage happens will dictate the changes you will see.

My Chris had pronounced FTD with complete change in personality - paranoia, rage and withdrawal.

You are also right again that she is trying to cope with this diagnosis and with the constant losses. ALS produces a situation where you suddenly lose all control, so even without brain involvement PALS often become quite controlling as they grasp for something they can control. I think that's pretty normal, but if you have a good relationship you can usually work through that with them.

I've been reading some of the information you've shared. Man, there is so much to learn! And though I do see some of her bahavior as the "side effects" of this decease and her lack of sleep, I definitely see others that are worth mentioning to her doctor. Thank you so much for sharing!! I will continue reading and see where we are after I talk with her doc. Hope you're having a nice day.
-Erika