Over one year as caregiver already.

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Hi everyone, it's been a while since I last posted here...busy busy busy! Almost thirteen months since Mom came home to stay, seems hard to believe! On the upside, Mom's doing pretty well. Health is good overall, a few very minor issues here and there but not anything unmanageable. She's in good spirits, the dementia hasn't improved but it really hasn't gotten any worse either. In all honestly I think being home has helped and frankly I don't see what the typical nursing home would be doing that I can't do myself and, in many cases, better right here. She has her anti-coagulant monitoring 2x a month and sees a doctor (home visit) monthly and so far so good. On the downside, as I'm sure many of you are well-aware, it's a grind. Personal care, shopping, laundry, housework and of course bills bills bills. I have a friend who covers for me whenever I need to leave for any length of time but for the most part it's all me. Help from family has been negligible, Mom's grandaughters simply don't seem interested in visiting very often much less actually helping out. I'm planning on possibly hiring someone in a month or two when expenses allow, just to get away for a few days and relax. But it's expensive, so until there's an opportunity to get ahead a little I'll have to make due. Mom can be left alone for a few hours at a time depending on the time of day and her meds, but certainly not overnight or anything like that. Still, all in all it's not quite as limiting as I expected it'd be and as time has gone along she's developed a pretty reliable routine. Of course there are those "bad days" here and there, particularly when she's not able to sleep properly and those days can be a strain, as the complaints and bursts of irrationality increase exponentially with lack of rest. In any event we're hanging in there and after all this time I definitely feel a sense of pride in having met these issues to the best of my abilities, while I wish it was easier at times (and also that her grandkids would help out a bit) it's gone pretty well IMO. Hope everyone else is well, best wishes always!

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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.
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One thing a facility will be much better at, is giving YOU much needed time off.
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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.
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Thanks for the update - I'm glad you're doing pretty well.
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Thanks for the update! (((Hugs)))
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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!
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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!
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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!!
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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.
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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.
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