Our Story (long post)

texoma2808

Hello everyone, I've been lurking here forever and I decided it was time to come out of the dark. I started to add a discussion so many times, but honestly every time I did, someone else had the same problem and the answers were just what I needed. So, thank you to everyone that has posted, answered and helped me unknowingly. Hopefully I can now help someone who may not post but wants to. And I will continue to get the support and help I still need.

Hubby was officially diagnosed in 2014, but I had those "something's not right" feelings for a few years before that. Things were quiet at first, he had issues with memory, he made lots and lots of notes, kept forgetting how to work the phones & remotes. He continued to work and drive for a few more years. In 2018 he was fired from his part-time job for "mistakes" and got lost going to the dentist we had been going to for years. I knew it was time to stop his driving and start watching him a little closer. He was an easy one to stop driving, I just told him I was having anxiety attacks anytime I wasn't in charge of driving, so he let me drive. I just had to be available or able to talk him into delaying until I was off work if he wanted to go somewhere. Fortunately, I worked from home so it was easy to see where he was starting to need help. The pandemic actually helped, I just kept telling him everything was closed. By the time things started to open up again, he forgot to ask to drive.

Fast forward to 2023, he's now in early/mid stage 6, I think. He no longer asks to drive, but will insist he needs to go during his sundowning times, go home, go to work, go somewhere. I explain, cajole, distract, fib, lie, anything I can do to get him out of idea to leave. Sometimes it works, other times he just keeps escalating, but he does finally give up. And by then, I'm completely drained. But I get over it and start again the next day.

He's still the same easy going, happy guy he has always been. I'm so lucky that he hasn't ever had the angry, violent, paranoid issues that so many others have had. The most he has ever done is yell at me a bit for not letting him leave. I can handle that.

He still can walk on his own and dress on his own. But when he's tired, he gets wobbly and sometimes the way he dresses can make you scratch your head. Underwear ends up on the outside of the pants :) , no shirt, but pants; no pants, but 2 shirts.

He's a wanderer, so I have locks and sensors on all my doors. A burglar couldn't even begin to get into this house. And my hubby, who disappeared on me twice, can't get out either. I was lucky that he wasn't hurt either time, but it was another aha moment that reminded me, life is not the same as it was before.

We have now entered the land of incontinence just in the last month. I'm washing his bed clothes and mopping the floors daily. Oh and the cat is unhappy with him and if we leave his bedroom door open, the cat will run in and pee on the bed too. Sometimes, I have just too much fun, lol. I haven't brought up the subject of diapers or depends to him yet. Right now, I think he will fight me wearing them, so I'm trying to decide how to introduce them. I do double make the bed (a trick I learned from here, thank you) so at least I don't have to make the bed in the middle of the night.

We are also starting to have trouble with food. Either he doesn't recognize what it is or doesn't know what to do with it. I try to stick with items he's always eaten, but that doesn't always work. I just sit with him and give him bites of everything. Sometime that kick starts his memory, and he takes over, other times, he lets me feed him all of it. I just can't believe that my college educated, strong willed, Air Force veteran is just sitting there allowing me to feed him.

Also, he needs help with all the usual ADL's, brushing his teeth and dentures, showering, reminding him to drink, eat. I swear if I wasn't here to help/remind him, he wouldn't eat or drink all day, brush his teeth, take out his dentures or put on (and take off) his hearing aids.

So that's enough of my issues with my hubby for now. I'm sure I'll have more to say as time goes on.

I'm lucky that the VA has given me some hours for respite. At first, I hesitated to take them, but I can attest that if you can get respite hours, TAKE THEM. Right now, that is the only way I keep my sanity most weeks. I've made our story rather light-hearted, but everyone that has the need for this discussion board, knows that life is not light-hearted right now. It's hard, hard, hard and every day is a struggle to survive. We have some quick good times, a smile here, an easy day there, sometimes his old dry sense of humor pops up and he makes me laugh and I bank those times to get me through the worse times.

I love my husband of 31 years, but I don't necessarily love this man he's turning into. I didn't sign up to be a caretaker to an 80 yr old man/child, but here I am. Trying my best to do my best every day, just like everyone here is trying to do.

I hope our story will help someone to maybe feel not so alone or to realize that we are going through the exact same things and feelings as they are.

Keep Sharing, remember to take a deep breath and love yourself!

Texoma2808

Joydean

Texoma, when you mentioned depends I couldn’t help but remember when I decided to start using them for my dh. He had become totally incontinent, the last explosion I decided it was past time. After I got him all cleaned up I put a pair of pull ups on him and told him they were special underwear that would help me. He’s never questioned me about them since. Doesn’t mean we don’t still have accidents but they sure make life a little easier. My dh too is a vet, navy river boats. My dh is pretty easy for now, he’s late stage 6 and entering 7.

glad you decided to join and you will be getting more folks talking to you. Best of luck on this horrible journey.

gampiano

Hi Texoma,

Welcome to posting on the forum.It took me awhile as well, but now that you're here, don't leave! Your story is so familiar, yet each of us has something unique to add.

We are also with VA, and they have been great. They have approved us for a ramp, which will be coming soon, and have provided other equipment and support. So far, it doesn't look like i can get respite care because i live in such a remote area and VA doesn't affliate with any resources here. However, we are also using Hospice , very recently, and they are bringing a volunteer over on monday to hopefully give me some breathing space. They also have a respite program, and the nurse is looking into that for me as well.

Any way, welcome again, and thanks for your positivity.

Maureen

JeriLynn66

Welcome @texoma2808 , glad you found us.. though sorry any of us need to be here.

I’m caregiver for my 97 year old Father in law who is a WW II Army Vet. I’m all he has left.. he is in Stage 6 but not yet incontinent.. lives in a continuing care facility that will eventually provide memory care. We get by.. he’s so appreciative of our relationship. I dread the days I know are coming.

On a positive note, I visited Lake Texoma when I was working outside Sherman, TX. It’s absolutely beautiful.

ronald71111

Hi TexoMa, not sure about your name with Tex in it, but we might be neighbor's sine I'm a Louisiana boy.

My wife was first diagnosed 9 years ago and its been downhill ever since. I tried until a few months ago to keep her in panties since she was more comfortable in them, but finally went to the adult diaper. The way I made the change was telling her one morning that I had her some different underwear for now because her old ones needed washing. She excepted it with no problem and even though a time are two she complained she still wore them. I also go through the eating problem with her. I have better luck with feeding her finger food instead of a normal meal. I still cook whst she use to like and sometimes she eats it and sometimes not.

I'm glad you have VA help! I am a veteran but the VA doesn't have help for veterans that are caregivers, it's only for caregivers of veterans. I have mentioned that it would be nice to have a support group that veterans like myself could attend.

It's a lonely road but I would not change the years we had together. Just miss my wife!

Ron

Carmen M

Glad you have joined the group. Your story sounds so familiar to me.

When my LO became incontinent I started with the DEPENDS right away. My LO wears them everyday as I might go thru maybe 8 or more a day since I don't want him sitting in a wet diaper. Since we are receiving health care from the VA, they supply us with adult diapers like a prescription. That has saved me alot of money for sure.

I am so cautious during the sundowning time. I turn on all the lights in the house to make it appear like its still daytime. When I spoke to the ALZ hot line, that was a suggestion they gave me. I have been prescribed seroqual for the moments he might start to get agitated and want to "GO SOMEWHERE". On occasion, We just got into the car and I just drove around until he fell asleep.

I have applied for that Comprehensive Assistance for Family Caregivers thru the VA. My LO might not meet all the requirement yet which I am thankful but I sure need the help. Especially RESPITE help.

Like us all, I am so exhausted but have to keep going. Its just two of us, family lives elsewhere so not much outside support.

Stay strong! All we can do is show compassion and love.

Lgb35

I am buying adult diapers for my FIL who does not have dementia but is incontinent. I have been getting Tranquility nighttime. They had the largest capacity that I could find. They have made a world of difference for him. He still has accidents but not as frequently as before.

I know the time will come for my DH who is still at the MCI stage.

Watson1

Thanks to long post. I think all of us find our selves in the my post can wait situation. It was good to follow the whole story because many of us are only part way through our journeys. I helps to hear all the ins and outs of everyones experiences. We all learn ,we all benefit , all postings are important.

Jgirl57

Thank you for posting and I wish you success with the adult diaper briefs . I bought the grey color men’s disposable Depends brief for when my HWD/Alz had his last colonoscopy . He didn’t fuss about wearing them , but at least I have them now for when the time comes. I think the grey color and easy on/ off was plus as a starting point. My Hubby still knows he has to go, he just does not give himself time to get there or decides too late that he needs to go. I have to prompt more frequently now.He scowls at me but I no longer let it bother me. I am now contemplating when I will have him wear them if we are out doing errands. So glad you posted

SDianeL

Texoma2808: Boy! your story is almost exactly like ours. My DH a Vietnam Vet is 78, was diagnosed 2 years ago but has had white matter disease since 2015. He's in Stage 5, going into Stage 6. We've been married 38 years in December. He's been angry & lately depressed. On Risperidone & anti-depressant coming. He is also at the stage where he doesn't make it to the bathroom in time and has to change his underwear several times during the day/night. He did try to leave one night and I ordered the locks but haven't put them on the doors yet. I put a better light in the bathroom and one in the bedroom and hallway and left all the lights off in the rest of the apartment and that seems to guide him in the right direction to the bathroom. My daughter is coming over to help me put the waterproof pad on the bed and 2 layers just in case. I will order the adult diapers to have on hand. We were approved for Caregiver Support and Respite Care through the VA and they have been great. They referred me to Assisting Hands which is a great company if anyone needs help and is willing to pay for it if insurance doesn't cover it. They have locations throughout the US. So far I'm using 4 hours each week. My DH also has trouble with food. I just fix it and put it in front of him and he eats is. He asks me what it is. He asked me this week what was his ex-wife's name. The mother of his 2 children. I cried. His oldest daughter died a few years ago and he doesn't remember her name anymore. Thanks for sharing. PS: we love TX. We lived near Dallas for 3 years. Did you know that if a Veteran was exposed to Agent Orange that they are twice as likely to get Alzheimer's or Dementia? The VA will pay disability for it. It's not on the presumptive list but any Veteran diagnosed should file a claim if they are not disability rated. They also have a catastrophic disability rule where they can help even if they don't qualify for a disability rating. Sending hugs.

Paris20

There are different kinds of underwear that look less «diapery.» When my husband became incontinent, I found pull-ups with pinstripes. Since DH is a diehard Yankee fan, I told him it was Yankee underwear. It worked!