Hi - I'm 58 - don't you dare tell me I'm not young enough for this group! 😀 My partner is 75 and we've been dealing with all this since 2016… thanks to FB memories, which reminds me regularly of some of the things that happened that year that made us wonder if something was going on. She was diagnosed in January of 2020, just as the pandemic started. I work full time, 2 days at home and 3 days in the office about 4 miles from home. My boss and coworkers are amazing and I think I'll be able to stick with this job and the hybrid work schedule long term… whatever that means. I've been told not to retire to take care of someone else and I agree with that 100%.

At this point, she wants to stay home most of the time, and does nothing all day other than feeding the cats and dog too much and eating too many granola bars. She would fill the birdfeeders ten times a day but can't remember to clean the cat box. I can get her to visit her horse most days but she won't go with me to walk the dog. She can sort of use her cell phone to text me and her sister, but probably couldn't pull together all the parts of calling 911 in an emergency. I made 3 visits to memory care places last week. I don't think I could get her to go to a day program and she won't let anyone in the house.

What's keeping me sane right now is short bursts of outdoor exercise. I can get out for a bike ride and be home in an hour. We live by a lake and I bought a kayak this summer, so I can get out for an hour or so and get some peace without having to get it on the car and drive someplace. Yoga with Adriene on YouTube saved me last winter when we didn't have much snow.

SueKat, my mom had vascular dementia. I've learned a lot of things here that I wish I'd known at the time!

Do I worry about her being home alone? Yes, and, sort of, but not really. I should worry, and I'm sticking my head in the sand right now. As I said to the person at the MC places I visited, we're one incident away from needing more help and maybe subconsciously I'm waiting for that incident to push things along. Having someone come in would probably create more stress than it would alleviate. I gave up on having the house cleaners every 2 weeks because I had to deal with her arguing and being a PITA for the entire time, which meant I got no work done for half the morning on my WFH day. Friends are two steps ahead of us with a parent, and after much searching found a person they thought would be a great fit, and after a month the person got a better job and left with no notice. I can't imagine having to manage all the "HR" stuff of finding and keeping someone and also the negativity around having them there at all.

And, it must have been terrifying for you to have to find your husband unconscious. I've never had to deal with that degree of injury in any context.

the MC search… In a perfect world I would go for the big campus where my mom lived in AL. Flowers, music, coffee shop, etc, great vibe for the families, run by a nonprofit, $$$. This week I heard from the ADRC person who gave me the link to the state inspection records. The flowers & music place is suffering from some management issues, apparently, and has had some surprising management-type problems in the past couple years. The smaller place that is a franchise had no violations or issues noted in the past 3 years. So I'm back at square 1 with no strong preference for either place but saved myself a ton of time and effort by crossing many others off my list once I looked up their state records. Now I need to complete the application, which is hard to do from work but harder to do from home when she comes into my office a hundred times a day to tell me about something cute the cat just did.

i just ordered my pellet stove. It is never too late.

I am new here. My husband was diagnosed with EO 4 years ago. I was his caregiver for the past couple years as well as working full time. I recently had to put him in a memory care facility because I couldnt do it myself anymore. I have been very strong through all of this but in the past month I am a complete mess. All I want to do is cry. We don't have any kids and I have one sister living in the area so I don't have a lot of support. I'm trying to find others like me and am seeking it out here. I need some direction as to if there are online discussion groups that might help me.

Thanks

Kris

Hi

me: 57 YO. DH 69 YO

My dh was diagnosed 1 year ago. I’ve been seeing issues for about 8 or 10 years. I had considered divorce at times during that time. He was cranky and convinced we couldn’t afford anything. Everyone, including me, thought he was just getting old and grumpy.

Now we have an FTD with ALZ diagnosis. I’ll end up keeping him home because our assets are too high and quite possibly get zero help even at home. I am no longer a spouse. I am just a caregiver. I am the first to tell you, I am not caregiver material.

I’m beyond frustrated. Thus far I can’t find an in person support group nearby. Dementia organizations seem more interested in raising money then actually helping. Seems I can join support virtual groups around the world. I want in person so I can get out for an hour. I almost didn’t sign up for this forum because I’m tried of virtual, boards, pages or forums. I need human contact.

Hi, I am a 55 yr old caring for my 56 yr old (EO) husband. He was diagnosed 4 yrs ago during the pandemic. It has progressed quickly. I had to quit my preschool teaching job to care for him full time. I am lucky enough to have my 24 yr old son home with us (sort of lucky, he quit school to come help, so there's a whole different anxiety), but he really is just for emergencies and company. Neither of them are comfortable enough to have my son assist with personal care. My husband was always horribly self-conscious to begin with. Anyway, he needs a lot of care now, and I am winging it. I help him bathe, dress, brush his teeth. But it's so strange, and I have no training in adult care. The bathroom issues are the
hardest. He wears Depends, but still tries to use the toilet regularly and winds up just going everywhere daily. He doesn't understand many verbal cues when he is flustered. And he is always flustered with daily care. I do not know how people do this. I am constantly following him around cleaning up, changing clothes, etc. The doctors are not helpful. They told me right away that he would need care. They did not tell me how I could pay for it. His disability is our only income. It's high enough not to give us support, but if we put him in a facility, we would not be able to afford our home. My 30 years of preschool teaching experience nets me a whopping $10,000 a year. Plus, he really is still very aware, and I don't think he would be able to handle it...and we are honestly not ready to let him go. So I NEED to learn how to be his caregiver and do this progression at home. I just stink at it. Kids are so much easier. They are cute, and don't have 30 yrs of marriage grievances lying right under the surface. That's just the bitterness talking. I love him, and am in for the duration. I am just not good at it. I yelled today. I know it's not his fault, but it was the second mop up, clothes change with little sleep...and I suck. He cried. It's going to get harder and I am already losing it.
End of rant. Here is my question for this particular hurdle: anyone have advice for bathrooming? I have installed a handrail. He will not go when asked, he gets confused at the question. He is ninja silent, so he gets past me all the time. Maybe a handheld urinal? Any advice would be so appreciated. (Also, if this is the wrong place for these questions, please let me know and sorry in advance)

Thanks for letting me vent.

Wow, I really appreciate this response. I love that you talk about your faith, too. It's the only thing that has gotten me this far. Though I will admit to sending some swear words upwords as well.

I saw in this site that there was a program that gives caregivers some practical suggestions. I am waiting for a call back. Hopefully they will have some insights, and maybe some ideas about what is coming next.

I don't really have help financially, but we have been given what we need each step of the way. It feels horribly mercenary to worry about how we make ends meet when he is gone. I am 12 years away from being able to retire, which makes me feel too young. But I am old and exhausted enough from all this to freak out about trying to start a career at this point in life that makes enough money to get us through (definitely not preschool). It wakes me up at night. Though it really shouldn't. Like I said, God has provided everything. We have had all our needs met even after having to go on disability, medical bills, house issues, everything. I have just always had 10 yr plans. I think I am being taught to let that go...I am just stubborn and would like to take the fail and move on to something else :)

I don't get out very much at all, though when I do, even just to drive to the store, I agree with you. It's recharging. I am tied here due to the bathroom issues though.

Have you had any issues with friends and even family just ghosting you? This was a huge surprise to me. My husband's own brother couldn't handle even seeing him...even in the early days. I lie to my DH and make excuses for everyone because he doesn't need to know. But it was just so shocking. On good days, I realize that some people cannot deal with the sadness. But it has caused me to reevaluate even my foundations. Not always in a bad way. I think I am different, too. I have to put on a sympathetic mask when I hear about other people's problems...problems that would have upset me before this too...but they seem simple and silly now. It has all left me more isolated than I have ever been in my life.

This is getting long and rambly. I do want to say thanks again, so much, for writing back.

Thanks again (please don't feel pressured to reply instantly, I appreciate you reaching out any time). I have contacted the Lorenzo's House. That was super sweet of you to send the link. I just need practical advice on how to do this.

I think my son is ready to head back out into the world, too. But he is still anxious about us, and even his own future. It was a crazy disruption for him with the illness and the pandemic hitting right when he was trying to navigate college. He had a year left in a BioChem BS degree. But it all became too much, and he came home. He has anxiety and depression and is stuck. He has been an amazing blessing, but I do worry about him get back out into something more normal for his age. He works part-time at the mall now, and is just stuck. I think I can handle him focusing more on his own goals now,too. But he doesn't feel ready yet. It's really nice to hear that you have such a supportive and stable situation now. That it is possible. Thanks again.