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!


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.

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