Over one year as caregiver already.

dmanbro, my gosh has it been 13 months already?.... it seems like only yesterday when your Mom was in rehab and you were wondering what is next.

Thank you for the update, and glad to read that both you and your Mom are doing well. Nice that Mom has a routine, that's helps.

Yes, you will need some rest for yourself, a couple of days to breathe here and there. Caregivers are so very helpful. I remember reading about your nieces and how they are of very little help... one day they will mature and want to help out, you can only hope.

dmanbro, glad to see you are doing well.

This sounds pretty much how it is for me with the exception that I do have my oldest son living with me and he is a certified MA so that helps me out a lot. We work in shifts as he takes care of his wife too that has MS. Glad you have found a happy medium and I can understand about the grandkids not helping out much. That's okay one day they will wish they had spent more time with her even if it was for helping out with their grandmothers care. Good Luck and I truly can relate to what your dealing with. It's a 24/7 job that's for sure. We also have Diabetes issues on top of everything else. It does keep one busy and on your toes. A routine is very helpful for sure. Again Thanks for the update and glad things are working out well for you.

Good to hear from you! Thanks for the update.

Right there with you. There have been tough times, but I've learned to work with it, role with it, improve it. It's been almost 3 years for me. Pretty much the same, no one comes to visit dad sadly, they don't even call. After awhile I realized I don't have the time to call these people and "report in" and of course I was never obligated to, they got huffy, but seriously people. I'd never done this level of caregiving before, it's a learning process including socially. It's good to get out with dad which we try to do, but it is very limiting what we can do, my dad is an outdoorsman, he's confined to a wheelchair, so it's hard. I would love to bring someone in so I can get out and have fun besides running dads errands, but I would recommend to be very very careful. I had health aides in my home for the first year dad was here, different ones, one tried to pull a sweetheart scam on him and get his house, he doesn't live there because it's in bad shape, she didn't know, another tried to get him to give her money so she could bring her mother to KC from Colorado, and several things went missing from my home, even a small statuary piece that sat next to my driveway, so be careful there. Otherwise my dad is doing much better now, he's happier, his health is a lot better, just aging and the wheelchair. Thanks for sharing your story with us, keep us updated.

Dmanbro, I am new to this forum so I am not familiar with your background. It was refreshing to read your story. My 86 year old mother has dementia and has been in an ALF nine months. Even though her ALF has done a relatively good job, it is using her assets up very quickly. Mom has not accepted the ALF as her home and is constantly begging to go home (not to her childhood home). On top of the normal ALF costs we have had to hire a private sitter for four hours everyday during Moms sundowning period. Mom is in good health physically, for which I am very grateful, so hopefully we will have her company for years to come.
I have debated whether to retire from my job two years earlier than planned so I can take care of Mom in her home. It would be less expensive to hire part time caregivers to relieve me as needed than the cost of the full time ALF. By doing this Moms assets would be stretched out to support her longer and I am confident I can provide better care and social life for her. We get along with each other very well. We also have many relatives and friends close to her home. One big problem with this plan is that Moms home is 250 miles from my home and my husband will not be retiring for another two years so we would have limited time together. His parents live in the general area of Moms home so he would not mind visiting frequently and Include a visit to his parents.
Another option would be to build a studio apartment addition on to our home which would cost less than a year in ALF. Then I could take care of Mom, with some caregiver help daily and still live at home. We would have to use Moms assets to build the addition which I am not sure would be legal. (My brother and I have POA and he is okay with all three options: stay in ALF, move in to Moms house, or build addition on my home. )
It sounds like you have successfully taken on the care of your mother albeit not minimizing the stress and grind that the job entails. I admire your efforts. I am debating whether this would be a feasable option for me and Mom.

Sell your mom's house, use any proceeds to build an addition to yours, and if you feel you can handle taking care of her, then retire early with all the penalties (401K, IRS, Social Security). Whatever you decide, know that 80% of folks with dementia are kept at home (or a relatives' home).

That last comment was to Bocadebo - and to dmanbro, good luck with the rest of your journey as it will get progressively worse, but you are prepared (I hope).

Good luck with your journey. I feel that I'm just starting out. My husband is relatively young (80) and was diagnosed with Parkinsons and Lewy Bodies a little over a year ago. I'm keeping him with me as long as possible with full time help right now but don't know how long this will go on and when the money will run out. We just keep plugging away one day at a time, one foot in front of the other. Terrible disease process. Watching him dwindle away is the hardest thing I've ever done. My heart goes out to all of us. Bocadebo, I usually try not to give advice, but unless you KNOW people in your moms neighborhood would be there to help out, it seems like having your husband there would be an added help. Especially for things like "oops,I forgot to pick up milk, would you keep an eye on things for awhile." Not sure an entire studio apartment is necessary as it doesn't sound like she will be using it long and it will come to a point that she should not be unsupervised in a kitchen. A bedroom and adapted bathroom should suffice. While every journey is different, be prepared for things like waking up to a pile of poop in your bathtub or the kitchen floor. If she is sundowning, she will start wandering and you can't always contain her. I have installed cameras to be sure caregivers are taking good care of my husband and you can get GPS tracking devices if she starts wandering. It is a very, very hard job, even with full time (36 hour) help, but it is a rewarding job. Best of luck to you.

dmanbro You and Your dear Mom are doing so well, it's wonderful to learn. You can be very proud of Yourself since Caring for Your Mom at home is the greatest gift You could give. I discovered that Friends disappear like mist, and Family are great to come and visit, but leave again soon after. It's down to You, but tell Yourself WHO NEEDS THEM ANY WAY as You are well capable. Instead of hiring a Carer to relieve You when You are going away on a long over due break, apply for a RESTBITE CARE stay for Your Mum as its FREE and You and Your Mom are well entitled to it. You won't need to worry since Your Mom will be cared for by the best Nurses & Doctors and Personell.

Dmanbro!! So glad you and your Mom are doing well!! Please take a week for yourself. I know it sounds impossible but really make the effort to take care of yourself. Hugs!!

I almost feel like I could have written the same post! Hang in there - you are doing a great job and hope you can get occasional breaks-that burnout for caregivers is a real thing. All the best!

I was just thinking the other day that it's been quite a while since you've posted, and was wondering how everything was foing for you and your mother. I'm glad to read your very positive post and know that you're both doing as well as can be expected under the circumstances. But it's also wonderful and encouraging to read how positive you are about your role.

Thanks for stopping by. Don't be a stranger!

Thanks for the update! (((Hugs)))

Thanks for the update - I'm glad you're doing pretty well.

Bless you endevors. Sound like your on right track. Enjoy her company while she is here. Sometime no matter how hard things are while they are here with you. You really miss them and caring for them. Because you care. You come to even miss the hardship involved. Hardship was part of Caring for them routine.

One thing a facility will be much better at, is giving YOU much needed time off.

Wish that were always true.
Personally When I go I have to look at Inflamed skin over hands breath on abdomen recurrent cellulitis. Same dirty clothes on over two weeks same blood splatter on shorts leg. Aren't keeping chilled tier step qualified TNT peptide based, intrinsic at bedside in 27 hr soft freezer lunch 12pk size bag. So not drinking them.
Acquiring coverage from facility Dr. I saw twice did coordinate when I saw and addressed. But them shredding all records and discharging to make him go bye-bye. Yes, I reported it all. And there was adminerstrative diciplinary review coming up 29th. Still waiting on MMANO for med. Applied for tierstep MMANO requiring talked to MMANO NP casemgr did as she said, told them his records show the tier step they want the prior med medically contradicted. An MMANO review says he doesnt have any evidence nor documentation of system failure his SNIF, LTC admitting Dx on admission form is!!
Good Note saw Dr. That attending hospitalist who made out SNIF admission form and Did Dx. He at affiliate hospital. Two same name. Couldnt find him because cut his longer than shoulder blonde hair. He the on described with topnotch.
Glad I found him heard him when came in and talked to my mom roomie at hospital. So I know where to send from Facility. Have orders to go ER from PCP if not better did with silvadine zinc and macrupurin. But peg being out not being changed kept dry. Know it cellulitis from stomach secretions and trapped btwn abd wall. Was no growth on culture.
Have pulmonary appt 29th have to make that fu from last CT Dr. n Radiologist want PET scan. So have to make sure keep appt even if they have to reschedule their noon Administrative diciplinary review care plan. At least the Dr. at facility on board. Snippy Social Worker didn't know what to say when Dr. Confirmed he has to continue with his MMANO PCP and the specialists he sees that cann't be done at facility. I detest people so arrogant they Fake sweet to your face.She admitted she didnt like the hands on only BSN because of doors open perfers Soc Serv.so she gets people hired that just graduated aren't qualified and takes under wing. She controls. Has DON Bsn soc serv. Know her now from last place ADA and Oumbuds advocate let him sign himself out of because of withholding from services and falls not properly charted not DC meds told contraindicated an dc by neurologist and PCP. That was non profit. Harder to do. I put him in for profit If they dont listen to HIS Dr. Then I call corporate. Why they tried to discharge him. She tried to say She didn't shred his paperwork. If not why no birthdate ss# . MMANO #nor LTC # address nothing. And yes I was A B told them to get it from file and I would look it over. They tried to get it from him. Haw!! He wouldn't tell the truth even if he could he told me he wouldnt even tell them his name and how to spell it they had his nick name as name on document.
So the stress is just as bad. He has cell phone but wont or cann't work it keeps it though. I don't go now because the reason for cellulitis infuriates me. Won't get better with out Peptide TNT, Thiamine at least hes getting the 100 mg thiamime but giving folic acid instead of ferritin. Folic acid will cause chirrosis doesn't detoxify nor help. Case where no real generic for ferritin, just like the Vital HP TNT.
So on positive side I do get a nap at night without having to watch him fromm getting out the door at 2 am and following him around his constant walking or me pushing him in wheelchair all day. Does give me chance to think and clear my brain.
Is a couple nurses there that are with it. They tried to get on one and blame her. I straightened that out with corporate.That it was Administration. Soc. Serv. Denying him perscribes lifesustaing medication and care. I fought for and supported change in way healthcare quality and payment standards met. Just writing it down on paper is all they used to have to do. Like all teachers used to have to do is have a ciriculumn and put it on a desk that must be supplied to get paid all required in a classroom.
If people tried as hard to provide as they try to not provide limit or excluse we WOULD have a pretty good system and healthy educated citizens.