I am so tired
I am just tired. And in pain physically from a rotator cuff re-injury (from turning, lifting etc) and tennis elbow from repetitive motions.
We are trying to find a caregiver - hoping tomorrow will be a good fit, the agency said then assessment nurse hand picked this person as a good fit for us and she’s finishing orientation. This nurse went through dementia caregiving with both her parents so I trust her judgment.
We had a nice lady who my FIL liked and was good with him (and she was strong!) but she flaked out and stopped coming and the agency can’t even reach her, but they think she had a lot going on personally, was in the midst of a move, etc. Then a fill in came Monday, which required half day training, but she was not as strong or patient and my FIL did not like her because she talked incessantly and had a heavy accent he couldn’t understand. He was so distraught over that he cried after she left saying he didn’t know what she was telling him to do. Plus she was not very strong (same as me) and nearly hurt herself even though I offered to help her with the lift.
Today, I’m on my own, and I’m already feeling the pain in my arm. I have to choose between stand and pivot (becoming nearly impossible because his knees buckle completely now) or using the lift which becomes a battle because he hates it. I think we are going to have to use the lift full time soon (if not now) no matter how strong the cg is.
Plus, my FIL is SO antsy. If I lock the breaks on his chair he rocks and bangs on the table or chair, if I don’t, he runs the chair into things over and over causing damage to furniture. If I put him in bed, he puts his feet over the edge and rattled the side rails constantly. I have to put him in bed to give him his prostrate medicine so his BP doesn’t dip too low but he doesn’t like it. And ever since starting the Risperdone he is trying to talk and getting so frustrated that I can’t understand him.
Thank goodness he still sleeps at night and eats well.
Anyway, I’m just venting, the only solution to my problem is help, and even searching for that is exhausting.
My DH is wonderful, but I wish he would come home and tell me to go rest, he would take care of everything, and the barn chores at night. But if my FIL has a BM, my DH calls on me and he won’t put the farm animals up at night, even if I am dead asleep on the sofa at 6 pm. Not his fault, he is doing his best as well. Working and coming home to deal with his dad, not easy for him either. We are just TIRED.
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I’m about to wrap his Geri chair bottom with bubble wrap… or my furniture LOL!0
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Whew! MayFlowers - a lot to handle. all i can say is ((hugs)). Praying the new person works out for you.0
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Will the aide be coming through hospice or the Medicaid waiver program? Reason I asked is previously dad was getting a hospice aide to come in three days a week (Monday, Wednesday, and Friday) to give baths but could not stay past an hour. When dad was having a bad day, he was given a bed bath. He also got 49 hours regular and 60 hours for respite under waiver but they just wanted to be sitters. Now he will get 56 regular and 90 for respite. The hospice aide was more reliable. I believe in my heart that if the patient requires more than just a sitter, we will have a hard time finding the right one.
That is me as well hate to say, Not strong” why is that? Why can’t we all be strong rofl? But you are dealing with a serious injury. Anyway when dad was sleeping in my home and in the recliner, I allowed him to use the arm on our 260 pound treadmill to pull himself up and out the recliner (this was the one with the handle on the side, not fancy ones) and then I'd turn him in the direction of this wheelchair. To help him stand up after the toilet, in his home, we installed a Drive Medical Handicap Grab Bar. Of course he has a small bathroom and so the tub was right in front of the toilet.
I’ve always been curious about these, Security Pole and Curve Grab Bar. No experience with them to know if a hoax.
I’ve also seen a few members on another forum mention they used Auto Bath Lifts. My fear with those is what if they stop working after lowering my loved one and then my loved one would be stuck in the tub waiting to be rescued.
Lifts frightening me and I can’t image being the patient if the person can't hold me steady and I go swinging. But maybe not as scary as it looks.
Waiting for our DH to come and take some pressure off, probably is just a dream. I sit here today asking my family if they would go with me one day a week and help me to take some pressure off or just be some company. You'd think I’m asking them to go visit someone in some hardcore prison. In fact, my young adult daughter hurt my feelings yesterday at the hospital. Dad called her the other granddaughter's name and she instantly became angry I'm guessing and gave me and him the cold shoulder and stopped talking to me. It was a horrible ride home with me trying to not burst in tears. Same today when I asked if anyone would be willing to help me one day a week - Crickets.
I wonder if your DH can pay someone to take care of barn chores. You both have much on your shoulders. I’m sure taking care of your FIL feels like having two jobs. I also hope the new worker actually works out.
I’m about to wrap his Geri chair bottom with bubble wrap… or my furniture LOL! What is happening? Is everything working again but now maybe too much? I swear by heavy duty tarp covers and then layer with disposable chuck pads. With the tarps I can white down really well if something makes it past and then spray with Lysol. At least that's what I use to do and hope when he comes home, things can be managed.
Hugs May Flowers
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Thank you, Olly…
The caregiver is private pay/private agency. We do get a once a week CNA through hospice for baths but no caregiving of course.
We have bars installed, and he could use them months ago but the problem now is my FIL will no longer straighten his legs and stand and he cannot hold himself up at all. He keeps his knees bent, and stays hunched over, and it’s only a matter of seconds until he gives out. I cannot hold up 125 lbs in that awkward position. My husband does better than me but it even wears him out. The younger caregiver was literally picking him up out of the chair and sitting him on the portable toilet (right next to the chair). I don’t think she would be able to do it consistently without hurting her back. The hospice CNA was able to help him up when he had some leg strength but no more.
I am actually pretty strong, I regularly carry 50# bags of grain and work with heavy animals, but it’s not just the lifting, it is the awkwardness of the lifting - I cannot use my legs like I need to so it is all arms and back.
Anyway…
The hoyer lift is not too bad to use, the sling holds his arms and legs pretty snugly so there is not much he can do. I push with one hand and hold him still with the other so he doesn’t swing. It’s more how ticked off he is after I have to use it. But maybe it will just take getting used to.
My DH can get him onto a shower chair which we roll into the shower once a week. It’s not too bad. He would NEVER let us put him in a tub - lol - he is afraid of water like that/can’t swim.
I should just be thankful that I do get help with DH. I feel for those trying to do this alone. I can’t imagine. Hiring someone to do barn chores is an idea, but it really only takes about 10 minutes and I would get charged $40 for the visit, lol. I just have to suck it up. Once I’m in the barn, I enjoy it - it’s kind of therapeutic.
Well, I just got a call from the agency that the new person will not be coming out tomorrow. Good grief.
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I hear ya. Hang in there.0
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Oh May flowers -- I know how you feel!
Really hoping things start looking up for you very soon in terms of the HHA help. Getting our hopes up only to have the no-shows or cancellations is hard. Irritating, maddening and also demoralizing.
In the same boat here you know. I didn't have the energy to start calling the new agencies vetted by VA yet. Just taking a deep breath for a minute and while my DH is putting me through my paces (and the ringer) lately, I am fortunate he's still able to stand and sit and transfer. I don't know how you do it (and with jokes...bubble wrap...hilarious, but also is probably not a bad idea!)
- But geez...you can't injure yourself further. Please be careful.
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May flowers - I am sorry you are going through this and will also say a prayer that your caregiver works out tomorrow. I am in a similar boat with trying to find the right caregiver, assisting with transfers (when injured), etc. And I soooooo understand about being tired. I have made some progress on the caregiver front but I need more help.
You mentioned your FIL sleeps well. Are you able to get a good night's sleep or would getting an overnight occasionally be a possibility so you can get some downtime/rest? Is there any time that is truly yours or are you always assisting the caregivers?
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ButterflyWings, sorry you are facing the same challenge with calling caregivers/agencies. You have a lot of challenges too - in some ways not walking made some things easier, but the inability to stand is really hard.
I have to find some humor or I would go nuts!
Tonight the craziest thing happened - so we decided to put my FIL in an upholstered chair to see if maybe he was just getting tired of the Geri chair. Within 5 minutes he managed to slide over to the ottoman, turn around, laid down and put his feet up on the back of the chair. He even did a few sit-ups from that position (where did this core strength come from?). Despite his protests, we moved him back to the Geri chair. He just looked so uncomfortable.
Every day is something new. And bizarre.
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Hi Fesk, sorry you are dealing with the caregiver search as well. I’m sure the caregivers flock to the positions with the sweet elderly ladies who just need their laundry done, meals and companionship - not the agitated dementia patients who need everything done.
I fortunately do sleep well - my LO sleeps from 8pm to 9am, THAT is a blessing. I did not expect to need to assist the caregivers as much as I have - but the first one was fine after day 3. The second one, I think I would have had to be very close to the house all the time to assist. My hope is that the caregivers can free me up to do some work around here and have some leisure time. I don’t really feel the need to get away, just getting outside is therapeutic but I’m hoping it works out that I can utilize the whole four to five hours instead of an hour here and there.
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Mayflowers, I am sending virtual hugs your way. I had just posted on the Spouse board that I was Worn Out and my situation isn't as bad as yours.0
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Mayflowers
I am so sorry. Between my bad knees and the back injuries I had this winter, I would be unable to care for anyone in the way you are. Can you speak honestly to your spouse and tell him you need him to help in the evenings and to deal with the barn chores? I’m sure there are several reasons why your FIL is with you and not in a facility. - but maybe you can impress upon your spouse that this arrangement can only continue if he helps?
Getting help in the home seems almost impossible. There’s the money issue, the number of caregivers needed versus the number available( leading to unqualified or flaky caregivers), the fact that they just don’t show up. Added to that the fact that the patient is hard to deal with or refuses to allow the caregiver in the home. For the few nights that we tried to get caregivers, we dealt with a caregiver that refused to come back because mom was up all night , and my parents refusal to allow one in their apartment. That is one of the reasons that I put my parents in assisted living when I got them back to our home state. But I know that is not a possible solution for everyone.
I’ve edited this because I went and looked at your profile and saw that you FIL has been in an MC until January. So now I realize that you maybe cannot place him back in a facility.
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Oh, Mayflower,
I'm so sorry. I've been through the same thing with trying to find a private pay caregiver for my mom. We finally found a lovely soul who is patient and kind, and oh so reliable. But when she was out sick recently for two weeks it made me realize this is all held together with toothpicks and string. The agency sent replacements, but they were all horrible. I told the agency not to send any of them back, and we'd wait it out until our dear caregiver returned. She's back now, and the world is spinning properly again, but this shadow of what if's hangs over my head. I'm scared of what could happen if we lose that precious caregiver. I'm scared of what the next decline in mom will be like, and how we'll manage it. I'm just feeling super scared.
You, all of you, are in my prayers.
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Quilting - when we brought my FIL here it was with the understanding that we would do the best we can and if we can’t handle it, the next step would be an SNF. The MC wouldn’t take him back without a 24/7 caregiver anyway (those costs they don’t tell you when you sign on, lol). So, I’m hoping for just 4-5 hours a day, to help me out in the morning especially. The thing that scares most caregivers off is the hoyer lift - even though I am finding it easier and easier to use (with the right sling).
Caregivers are expensive around here, more than the agencies. My FIL can afford it with his pension, so that is good. I probably scare some applicants away (on care.com) because I am honest that he can be difficult and combative- especially in the mornings and around toileting. It’s not every day, but I want them to know what they are getting into.
We had a full time caregiver when my MIL had cancer, and while she was thankful to have the help, my FIL (mild to moderate dementia then) was so hateful to her. Fortunately, he is over that now. He does ask if there are any women coming today, meaning caregivers, but he has not been mean to them. It’s clear he likes some more than others - the ones who are kind but don’t talk too much.
Fortunately, DH knows how worn out I am and he is doing his best to help. He does take over FIL’s care from 4pm to bedtime AND makes dinner, so I really shouldn’t complain!!! I feel a little silly even bringing up the barn chores. I am so wiped out at the end of the day but it is really a minor thing relatively.
Wild-west - I am hoping/praying I can find someone as wonderful as you have! I know what you mean about holding it together with toothpicks and a string. It all feels so precarious at times! Prayers for you as well!
So my, funny story for today. My LO has been rocking his Geri-chair when the wheels are locked which made an annoying squeaky-squeaky noise. I whipped out the WD-40 and oiled every part of the chair I could find that moved. It worked and the squeaking stopped. LO then said the chair was broken and wanted the noise back. Ha! I might get him a (not-so-annoying) squeaky toy.
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How did the new caregiver work out today May flowers?
Btw, I do the same on care.com and with agencies. I'm very honest so people know exactly what the requirements are. I'm surprised the hoyer lift is scaring people off though, I haven't used one but I would think that would be preferable to trying to do a complete transfer. I've only used a sit to stand.
Quilting - It is near impossible to get a good caregiver these days. It wasn't like this prior to Covid - at least in my experience. Many don't want to work with the agencies anymore and are trying to charge more than an agency. They are in demand, so they don't want the difficult cases. The agencies around here had no control over what their aides did - whether they showed up, etc.
And Wild-West - toothpicks and string - what a perfect description. If the caregiver leaves, we're sunk as you unfortunately found out. I've thought about splitting the day or week between 2 people so I might have some extra coverage in case one didn't show, etc. I found most people want full time (even though I think it burns them out), and I could barely find one decent (not great) person, let alone two and then trying to coordinate the hours - just didn't work. I work full time, so it will be extremely difficult for me to deal with this if the caregiver leaves for any reason. I've done it in the past and it's not sustainable.
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Fesk, the agency called yesterday and told me that ended up not hiring her. And they have no one else in the works yet.
I am meeting someone from care.com tomorrow, she is very experienced (20+ years) more checking out what his care requires physically to see if she is interested. It feels like we are the ones being interviewed instead of vice versa
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I hope the interview goes well. Keep us posted.0
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In assisting you in your daily duties
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I too hope the interview goes well. I've always said if ever there was extra money, I would try to hire someone outside of an agency for even more help. However, I have read elsewhere that if you don't go through an agency you will have to become an employer per say and report and do workmen comp. But I guess I'll check with legal if ever get to that point. Just wondered if you knew for certain on this or not?0
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I remember being so tired too. I prayed for you.0
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Oily - you are supposed to become a "household employer", pay payroll, etc. if you hire a caregiver directly. You can do it yourself as there are payroll services out there but, if you do get to that point, it's probably best to consult an accountant.0
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Olly,
I will probably a service like the one advertised on care.com - https://www.care.com/app/hp-vhp/homepay. It has good reviews but I’d love to hear others recommendations.
I just used a tax calculator and based on paying $30/hour for 25 hours/week, my portion of taxes would run about $3282 annually, or about $270/month. Plus the cost of a payroll agency if I decide to go that route.
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I would probably give Care.com's service a try if I was hiring through them.
I already have my mother set up as a household employer from when I hired privately. You need to get a Federal ID number and register with the state as well. I initially used a payroll service set up to handle household employers and subsequently used an accountant to calculate the payroll and handle the taxes. The accountant was actually cheaper than the payroll service and handled the return at the end of the year so that worked out well. You may want to reach out to an accountant and see what they will charge. They may be able to get all the Federal/state registration done for you too. I don't know if Care.com does that. You are also supposed to have workers' comp on your insurance. I think Care.com helps with that too.
Most private caregivers I've spoken to recently only want cash. Are you finding that as well? Is the $30/hour the going rate for private caregivers by you? That seems a little high. The agencies by me are charging that price.
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Hi, Fesk, thanks for the breakdown on what has to happen. We will talk to our CPA as well. $30 is on the high end of private caregiver costs here, some are even charging $40! There are caregivers with less experience charging less too. I am hoping to avoid a revolving door of caregivers because the job is harder than they thought. The agency we were using charges $25.
The woman I interviewed yesterday was amazing. She spent 3 hours with us yesterday (and refused to let me pay her for the time). My FIL loved her and she was great with him, funny, and really knew how to talk to and handle a dementia patient. Almost 30 years of caregiving and has been with many patients all the way through to the end. Wonderful references. She has other interviews so I don’t know if she will accept the job.
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I do feel like some people are price gouging on care.com, but I'm certainly willing to pay more for the right person with the right approach and experience. It's an important and difficult job. Unfortunately, I haven't found that. I did find someone who fits most of the requirements so that's where I'm at.
I'm keeping my fingers crossed and saying a prayer this caregiver works out for you!
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Fesk, I’m much the same as you. I think for someone who has a big learning curve (like a college student studying to be a CNA or nurse), I would probably pay $15, but I am ok paying someone like this woman I met yesterday $25 to $30. She really is amazing.0
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The caregiver we liked so much starts Tuesday, I’m so (tentatively) excited. I say tentatively because with how things have been up to now, I think something will work out just to have it not turn out as planned, lol.0
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Just chirping in about caregivers, I only need companionship for my Mom. She so bored and lonely but I can't even find someone for $20 an hour to play a game or even watch tv with her! Everyone I vet seems to bail at the last minute.0
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YAY! Great news! But I totally understand the trepidation.
Remember the cartoon with the coyote? He'd run off the cliff chasing the roadrunner, and give us a giant sheepish grin just before plummeting down. I often feel like that darned coyote!
Prayers for all to go well for your family.
Wild - - -
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Yay!!!! Best of luck May flowers! I so hope this works out for you. It also gives me hope for my situation.
And hang in there, bkrowes. It may take a very long time but hopefully you'll find the right person too.
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Thanks!
Wild West - perfect analogy! I also think of Charlie Brown - Lucy and the football, lol!
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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