Status
Not open for further replies.

SDSadie

New member
Joined
Apr 6, 2016
Messages
4
Reason
Other
Country
US
State
CA
Hi Everyone--

Hopefully I'm posting this in the right place.

About 6 years ago my father-- longtime academic, loving husband, stay-at-home dad, and just all-around exceptional human being-- started acting...weird... at times.

"Insidious" is probably the best word to describe the onset. It was like eating a favorite, familiar dish only to be startled every dozen bites by a mouthful of... something off.

So then, suddenly wary, you'd tentatively take the next bite, which would once again be so reassuringly marvelous you'd start to feel like *you* must surely have imagined the last one....

Until the time between bad bites starts to lessen, and you can no longer deny the fact that, far larger than the sum of any number of incidents, something very fundamental has shifted in this person you have so long known, and loved, and this fundamental shift can't be explained away by a sudden retirement, the death of a parent, or, as the doctors first thought, depression.

A depressed person might stop showering, but they don't usually stop showering and then want to go get the grandkids from school, utterly unconcerned by the huge stains on their days-old button-down shirt. They tend to understand why a spouse would no longer want to kiss them if they've entirely stopped brushing their teeth. They(especially someone who has always been such an intuitive "people person") would surely know that aggressively picking one's nose in public is considered offensive.

Anyway, long story short, Dad started falling this autumn. The way he describes it is his leg just suddenly "gives way." In fact, he's frustrated by the neurologists saying he has "weakness," because "I don't feel weak. The bastard just switches off out of nowhere." Anyway, he gets a walker, which he uses for a few days, and then decides he doesn't need it, at which point he falls. Lather. Rinse. Repeat. He gets away with this pattern for a few weeks with just bruises until one day he falls and his leg and ankle swell up huge.

Except he refuses to go to the ER for an X-ray for an entire week, insisting it's sprained. Finally, the swelling is so bad even he can't deny it has to be checked, at which point they find out the bone connecting ankle to leg is shattered, the orthopedic surgeon is horrified and schedules emergency surgery, and Dad now maintains that of course, he knew it was broken all along, he just didn't want to miss the important neurologist appointments he had scheduled for that week, in order to figure out why he's falling. (arrghhh!)

What is so very hard to convey to people is how very smart, how very bright my dad remains. He reads as much as ever, and can discourse on any number of subjects with insight and intelligence. But the man who drilled manners and consideration into his children is now often rude, and impatient, and strangely competitive. He demeans our mother in front of company. He acts possessive, and jealous and arrogant... but then sometimes the old sweetness and thoughtfulness will come through and somehow that makes it even more painful... and even now we doubt ourselves, and our own observations.

Thanks for listening.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,662
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Sadie, I'm very sorry to hear about your dad, and we'll support you however we can.

Does he live alone? Do you have support with a care plan? Does he have an advance directive/power of attorney in place?

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,870
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
Oh Sadie I am so very sorry for what is happening.

My husband was bulbar onset ALS with bvFTD and I so get it - your description is so perfect of the favourite family dish with the odd off taste. I know that I just couldn't put my finger on what was changing for nearly a year with my Chris. I certainly never put that together when the swallowing issues started.

Watching the actual person inside being eroded away is indeed the most cruel part of the ALS/FTD combination.

You will get lots of support here.
 

Nuts

Forum Supporter
Extremely helpful member
Joined
Feb 23, 2014
Messages
2,516
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
North Carolina
Sadie, I am so very sorry. Your description is eloquent, an I think the loss of the person is so much worse than the failing body. Both at the same time is horrific.
 

SDSadie

New member
Joined
Apr 6, 2016
Messages
4
Reason
Other
Country
US
State
CA
Thank you, Laurie, and Tillie, and Nuts for your kindness.

My dad does not live alone. He and my mom live in an apartment and my sister lives in the same building(separate apartment) and my mom has a few very supportive siblings all living on the same block. Sadly they live across the country but are visiting right now. We spent the day at the ER, though, as Dad was retaining urine and was in a lot of pain until he was catheterized. They were amazed at how much came out and he was euphoric by the end. He is able to self-cath but hadn't needed to in weeks so hadn't packed his catheter.

My brother is a lawyer and has been working on the legal pieces.

One of the more surreal parts of our situation is how he has absolutely no insight into his own changes in behavior. His ability to rationalize the craziest things really is astounding! He is also VERY gifted at deflecting.
 

Lscott71

Active member
Joined
Aug 22, 2017
Messages
57
Reason
CALS
Diagnosis
05/2017
Country
US
State
Texas
My husband has bulbar onset with FTD. The FTD started about a year before the physical ALS symptoms. Like you said, it seems like it could be your imagination that getting the better of you. It was that way for me for the first six months. Just odd things here and there. By August of last year I knew he wasn’t himself. It’s hard for me to remember what it was like to have a normal conversation with him. It’s just so surreal.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,870
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
SDSadie and Lscott71 again so sorry for you having to deal with the double whammy - indeed they have zero insight into the situation. Definitely they can completely rationalise and it's really important to keep this in mind - they don't normally have any real memory issues with bvFTD but they do have high paranoia. This means if you retaliate when they lash out, they will remember it and pile it on their paranoia stack.

No matter how hard it is, it is imperative for your own sanity in the situation to stay calm, let them throw their tantrums, and then find somewhere else to vent about it so you don't add fuel to their raging fire.

Not easy, at all, I know it xxx
 
Status
Not open for further replies.
Top