plans change, adapt. grow up.

[peacecomesfromwithin]

I posted a month or so ago, daydreaming about going to Africa to pursue my career.

In the meantime, my mother, who was in denial of her MND diagnosis, remains in denial. Every question/concern that I've had, she seems to have a doctor's opinion to back up her hypotheses to the contrary. I flew cross country to visit her last month, attended doctor's appointments, found that she was telling only bits of information that would lead the doctors to investigate her hypotheses but not see the whole picture. Of course, it's a thyroid problem only, she says. My feet are different. And I guess I forgot to mention that my hands are wasting away. Totally unrelated. When I bring up the "truth" I feel mean, but act as (maybe?) the voice of reason and try and tell the whole story that she seems to be trying to obscure. And then I left to go home and was totally swamped with work and got distracted (many hours of work a week and managing a team... and I love it, but it's hard to get away from).

But then, she choked on a chewable pill last weekend and ended up in the hospital again. Today, I am back with her, trying to get very essential work done, trying to balance how I can help her as well and not feel entirely frustrated by her ongoing denial. She's moved on to blaming all doctors, all medications - as causing her problems. Her throat spasmed because of the lidocaine, the doctor is awful because didn't call her back about her theories that the chewable pill caused her throat to spasm, instead of just having a problem swallowing. The swallowing test today shows that she has moderate dysphagia in her mouth, mild in her throat. The doctor said she can eat and drink what she wants, but pay attention and spit out whatever is too hard. Tonight we had ice cream and a little champagne for dessert and she choked again. I had to slap her on the back a few times as she wheezed, trying not to act scared as that seems like what she hates the most.

Africa seems out for now. She would even come with me, but the quality of health care where we'd go is abominable. My newest plan is to move her to DC - we could buy a house together and live together without help until she needs real help. And then we'd deal with that. Next steps are somehow packing up her house, buying a house in DC, and moving her out there... when both of us still work full time, I have no siblings, and she's unmarried and has been gradually pushing her friends away. How to make this happen, and soon? I don't know! I feel like sooner is better, right? Could spend more time together and get her to better doctors than those who are out in the middle of nowhere, New Mexico? Or should I prolong the transition until it's absolutely necessary?

What a long road ahead! I know you can't tell me this for sure... but does this sound like the right path on which to start? It's so hard to know what to do without any other family members chiming in. Thanks for all of your wisdom and support.

 

[affected]

Really tough, I can so relate having been through bulbar onset with my husband. He also had FTD and that exaggerated his denial and his ploys to deny things, not heed advice, then blame all that happened on anything else.

In light of how things are now, I would think sooner than later. If she is agreeing to move to DC with you now, do it now. Things can change rapidly and you may want to get her into a clinic soon, look at peg and bipap and get her set up for the best quality life you can give her now. As she will only deteriorate, waiting won't give her that quality now.

I presume you are living in DC now and that is where you want to bring her?

It's all your decision, but that's MHO FWIW. Whatever you do, you have support here!

 

[affected]

I will just add. We decided to sell our house right after diagnosis, and move to a smaller property with a house that would be better for his later needs. Chris was so excited, it was like one last new project, and he was so keen to set up a new home one more time.

In 3 months of a comedy of errors we were left with 2 purchases that fell through and no interest on a sale here and he had deteriorated so much in that short time that he was not going to be able to pack even a box of linen, let alone do anything to help set up a new home besides point his chin or roll his eyes. We pulled out and stayed here.

My point is, if you can do the move now, do it now. Hopefully your mother has a lot more time to enjoy setting up house with you and settling in and doing a little living still. It would be better to move soon and have that enjoyment, than leave it just a few months and find things have changed a lot.

 

[peacecomesfromwithin]

Thanks, Tillie. You are so right. I can't tell if it's in my head or not, but it seems like every time I leave, even if it's just for a few weeks, when I get back something is different/worse.

That could actually be wrong - as she hid her illness from me for months, pretending that she was in perfect health, until I saw her about seven months into it. Maybe I'm just noticing everything in more detail, the more time that I spend... but her choking has definitely gotten worse. No sense in postponing in case things miraculously stabilize for a time. It's going to be a challenge no matter what!

 

[lgelb]

Peace,
If your mom is in denial of having ALS, whether with or without FTD, moving her to DC won't change that, and moves are very stressful in their own right.

If you don't want to be a full-time caregiver, moving your mom to DC won't change that, and caregiving is very stressful in its own right.

If what you want right now is to be in Africa and that dominates your thoughts, living with your mom is not something you should do, with or without help.

Finally, if you've been renting, do you really want to be saddled with a house? Accessible rentals certainly exist, as well as other arrangements. And, to be very blunt, if she continues in denial while choking, she may not have long.

I suggest you consider carefully what is in your heart, on the table and on your mind before discussing your ideas with your mom.

Best,
Laurie

 

[gooseberry]

Peace, I so get wanting your mom close, so the worry is less. I can tell you denial sucks and it wont change. It is a way pals use to survive each day and try to get enjoyment from life. A house in D.C. is very expensive and you may need to do some things to make it more accessible to fit her changing needs.

I do understand your concern for your mom. But she is choosing this by not acknowleding what is really going on. If it is not ftd then you really need to think about how you will feel if you see this daily and will you truly be able to help her 24/7. Being a caregiver is so stressful emotionally,physically, and financially.

Can you get her an aid or someone to help her where she is? Do you have access to her doctors via health surrogate and a release of info document? That is what I would work towards so later on, you can help from near or far.

 

[affected]

I would not want to see any PALS living alone with aids coming in, let alone one who is in such denial. We all know how much it takes to look after a PALS. Peace you don't yet know, but someone needs to give themselves to her care.

I do agree that buying a house may not be the best or even easiest choice, renting may be best. We never know with this disease how long the road ahead is, but we can't take back a single moment once it has gone past.

 

[peacecomesfromwithin]

So, I have been thinking a lot about this - and there is no right answer I guess.

- Even though my mom is insistent that she is "getting better" and that she won't need long-term care for another 15 years, we've talked pretty bluntly about whether she would want 24-hour care or an assisted living facility when it comes down to it. It's like this weird dance where we talk about the elephant in the room but simultaneously pretend like it doesn't exist (at least, she does). This kind of talk makes me think that when she does reach a certain point where she can't be alone, that she will be open to outside help. She knows that I can't quit my job to take care of her, both from a financial and emotional perspective.

-Yes, the DC housing market is crazy expensive! BUT, the rental market is no better. If my mom sells her house and we buy a new one in an "up and coming" neighborhood, the mortgage payments will likely cost about as much as I pay in rent now. If worst comes to worse and things get much, much worse and we can't get her the care she needs and run out of money, it would also be something that we could sell - and the market just keeps improving (for now). I have a good friend who is a realtor and will hopefully help us find a place without stairs, or where we can put a ramp, somewhere with a yard for the dogs and windows so she can get some sunlight, even if she misses the New Mexico views.

-Medical care in New Mexico is bad, at least according to a lot of people I've met here - and that's been my mom's experience too. I'm wondering if she can so easily dismiss the diagnosis of someone from GW or Johns Hopkins or Georgetown, and if she could possibly get in a clinical trial at one of those places. And all of them are only 30 minutes to an hour's drive away. Her latest plan living here was to go to Arizona to see a new neurologist - a short flight or a very long drive. Who would go with her each time?

-As for my job - they want to keep me, but I only have so many frequent flyer miles and money to come out here (in New Mexico as we speak...) and weeks I can telework, and besides, I can't really trust her to get the care she needs. Africa can wait, for now. I've applied for another job within the organization that is more technically-focused. I'd live in DC and travel to Africa and Asia (which will pose challenges in and of itself), but I'd be around. And then I can reevaluate in a couple of years. It's not exactly what I want, but it's a good compromise.

Something that someone said on my last post I really took to heart. If I go to Africa, she might not be the same when I come back. Her swallowing has gotten so much worse just in the past six months. She has enabled me to do everything I've done in my life, and has given me everything she could to make me happy and help me succeed in life. While I'm not ready to be a full-time caregiver, the least I can do is help her in this transitional time, make things easier, spend time with her. It won't be easy and it totally scares me, but I think it's the right thing to do.

 

[Jeanau]

I think that in the long run you will be glad you made the choices you did.
Audrey

 

[affected]

peace, I believe that this is going to bring enormous internal changes into your soul.

You will take more personal strengths and true empathy into your work directions for what you decide to do with your mum now in her time of need.

How you shape this and work it out is purely in your hands to decide - what an honour in many ways to be able to do this. It won't be even the least bit easy, but you will have taken this on, in whatever form, by your own choice.

Do keep us updated

 

[Nuts]

Peace, I applaud your logic and it sounds like you are at peace with the decision to put Africa (as a move) on hold. Good for you. Our oldest daughter has been seeking a position in Europe with her company, and has decided to put that on hold for now so that she can spend time with her dad. She is not his caregiver, but she is his child and this means a lot to me. Life will reward you.

Becky

 

[SLAUGHTER1555]

I agree with what I've read waiting is really not an option Im sorta in this position now as far as moving i wish we would have moved back in the city before things progressed to where they are now. We need to move and um having the hardest time finding a place to fit his needs. He wants a house i want an apartment so i dont gave to worry about maintaining it.

Peace care giving is a hard tideous job and you do have to be completely committed. I had to quit my job to car for my Pals and it was hard it still is cuz i loved my job and i miss it greatly! But i had no choice we had no one to come in we couldn't afford it.

Sounds like you have a good plan hope it all works out ALS is tricky and you truly never know what you will get smh.