Respite vent

May flowers

I just got back from a short vacation that we had planned with my grown children before my FIL moved in with us. We opted to go with in home care rather than a nursing facility (which was looking iffy vacancy wise). We used an agency which used five different caregivers to fill the morning and evening slots. 

We only had one camera, trained on my FIL’s bed to see that they were getting him up. At some point it got turned sideways so we couldn’t see anything. 

I had written out his care in a lot of detail, 3 pages worth, but from the looks of it most of it was ignored. We had a friend stopping in feeding our pets/cleaning the litter box and she noted some concerning things as well, plus the caregivers were calling her asking for all kinds of favors which was weird. 

We are pretty sure one caregiver never got him out of bed. This same one was here when we got home today. My FIL was in bed and he reeked of urine. The caregiver said he was napping but after 2 hours (we were unpacking, cleaning), I went in and insisted the caregiver get him up. He was awake in the bed and he does not nap right now, he is awake during the day and sleeps all night normally.

He told me he changed his diaper, but the bed and his clothes still reeked of urine. There was one diaper in the pail from (9 am to 2 pm). Then he told me I needed to help him get him up (a 200+ lb caregiver for a 125 lb man. I had no problems getting him up into the chair (small woman with shoulder issues) I asked him why his clothes stunk and he said it was too hard to change him. I brought my FIL to the living room and the caregiver asked if he could come. I said, of course, it is part of the daily routine I wrote up. He left torn up care notes (for my FIL and others) in the trash which were not accurate. What is worse, a 6 pack of beer I keep (for treating goat issues, we don’t drink it) was gone, and a few crumpled cans were in the yard. I don’t know if that was the same caregiver but it is weird, that someone in charge of someone would be drinking on the job. 

My FIL ate like he was starving and drank 3 cups of water and he looked dehydrated. His skin pinched up and stayed up - he normally drinks 10-12 cups per day. His BP was very high (normally low). 

My pet sitter noticed other issues as well throughout the week.

We sent the caregiver home, got FIL a shower, clean clothes, dinner and bed. Fortunately, I did not notice any rash or urine scald, but I think the other caregivers were better.

I am so upset. I felt keeping him in his routine would be better than a nursing home but he was very out of sorts today. All the “respite” and the relaxation of the few days away feels for naught. Like I came back to bigger stress than what I left. I feel so guilty as well. I’m wondering if we will ever be able get away again for the next few years and trust he is well cared for

​fesk

May flowers, I am so sorry you had to deal with this but am very glad your FIL is ok. That is what is most important. It does not make it any less upsetting.

Sadly, I am not surprised by the lack of quality care provided. I have had (and am still having) a lot of difficulty finding decent care for my mother. I have also seen water limited so they do not have to deal with changing or going to the bathroom. In my experience, the agencies will send anyone. The quality of care varies widely from one to the next. Many are not trained either which becomes evident when they need to get the person up as you saw. Many want to leave the person in bed, chair, etc. so they do not have to do anything. 

I am also not surprised the camera was turned - I can almost guarantee one of the aides did that. I have cameras in my home and I have seen them move them. Not acceptable and always raises a red flag for me. The beer is a new one for me. Completely unacceptable. 

Hopefully, you will not have to give up on the idea of respite in the future. It would probably be best if you were able to get some aides in now to help that you can develop a relationship with and build trust with. Then when you need to go somewhere, you have care in place you feel better about. I am still working towards that goal.

Again, so very sorry.

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May flowers

Fesk , thank you for your response. Late last night I thought about the water thing - that would explain not only the dehydration but the very concentrated urine smell. Also, they didn’t put mio juice in his water which he loves and causes him to want to drink a lot. 

The beer was crazy - at first DH thought he had moved it somewhere or thrown it out, until we saw the crumpled cans in the yard. 

One caregiver that was here for four days, was very nice. Called me with many questions like was it okay if he drank the water in the water dispenser. Asked for detail on how my LO liked his meals, asked where the outside trash can was, and cleaning supplies, etc. I kind of don’t think he was the beer guy just at how conscientious he seemed to be. 

The caregivers glomming onto my friend didn’t have anything to do with my FIL’s care but it was more of a lesson learned. She left her number in case of emergency, but then everything was an emergency. She even got a call at midnight because one of the girls heard a sound on the back porch (squirrel probably). They asked her to help fix dinners, get him up, etc. 

It was so hard to get caregivers for this trip - we went through five agencies to find one who could staff it. Every agency was recommended by the one we contacted before. Hospice visited every day except the day we came back and they didn’t notice anything amiss

Anyway… my sitter friend put me in touch with a wonderful caregiver who cared for her mom who had dementia and I am meeting with her next week. I’m hoping this can turn into a long term relationship.

May flowers

Victoria, thanks for the good advice. I think a camera setup throughout our home may be a good idea too.

 I am hoping we can get my BIL and family a few hours away to commit to caregiving for my FIL next time. He always offers but it never works out as they always have something going on. I think we need to plan now and get him scheduled. I think he is really nervous about it, but if we have a daytime caregiver by then, he will have a lot of support. Part of me really hopes he will see firsthand what we  have dealt with for four years. He visits for a few hours a few times a year and that is just not the same. Not that he is unappreciative, I just would like him to put some skin in the game even if it’s just a few days.

We did lock up all valuables, jewelry, cash, all personal/financial files, etc., in a safe which was not tampered with, thankfully. 

​fesk

Good luck with the caregiver you are meeting. I hope it works out!

ButterflyWings

May flowers- I feel for you. We, too, are dealing with respite repercussions. Trying to get my DH back to baseline as we speak. I will post about our experience soon. 

Still gathering my thoughts while trying to keep up with post-respite DH. Processing and reflecting while playing detective in part just like you & your DH, trying to piece together answers from some clues since our PWD LOs can’t report back accurately of course. It shouldn’t have to be such a (costly) roll of the dice and then a mystery challenge to solve, just to get our LO’s quality care and a respite for us. 

If it’s any consolation, DH was in a ‘very nice’ MC cottage setting. Still, things that were promised did not happen and I have yet to get a straight answer from admin, nursing lead, or anyone else regarding what transpired regarding some specific questions and concerns I had. (The goose egg on his head at checkout being one of them.) Crickets. How his meds were administered, which ones, and the schedule has been vague since the first 24hrs after check in. Unacceptable. As in, that’s for them to know and me to find out, and what am I to do about it?

Hospice team followed him 1x weekly as usual, so they confirmed some irregularities, as well as seeming resistance from the respite nursing level, to just following the care plan that’s been working for him. The one I completed at the MC’s request (2-3 pages on their form). The same one the sales team & MC respite assessor (head nurse) was all smiles and head nodding about during our pre-admission meeting to review the same. Their promises are why I went with that provider & location of the 3 options given us for the dates I needed.

I hate to feel like respite isn’t worth it or will definitely cause regrets and more work afterward. I do know what you mean about that though. For now, I’ve learned a few more questions to ask if there is a next time. But I unfortunately don’t feel comfortable using this MC again mainly because of the condescending attitude from the leadership level that should be communicating better with the spouse, DPOA, primary caregiver. I hope your new lead from your sitter works out. Seems like a personal recommendation is a great benefit. 

Jean loves wildlife

May Flowers, and all of you who have commented . . . This is troubling to read as I am new to caregiving and cannot leave my DH alone, but really would like to get away overnight to visit my sisters in another state whom I haven't seen since before Covid. There are some good ideas here which I will use when I do need to line up respite care. Has anyone had good results when reporting egregious examples of poor care to the top person at the agency? Is there a licensing system where you can report? I like the idea of asking for copies of past inspections and even calling the police for a welfare check if you have a camera that has been turned so you can't see your LO. A personal recommendation is always the best but may not always be possible.

Cyndisaunt

I am upset with you for the experience you had. In home caregivers are costly and there is trust there that will be difficult to repair with future caregivers. Not to mention future vacations will be more challenging, at least that has been my experience. 

Caregiving is a very physical and emotional job and with any job there are people who put their whole heart into it and people who don't. 

I continue to meet new caregivers in my area every other week. I give myself a week of rest in between because bringing in a new person to our home and going through the routine is exhausting. We have not found a good match, but I want in home care for as long as possible so I carry on. 

I always go through an agency with a manager type person so that when I am away from home and the camera moves I put in a request for someone from the agency to go for a home visit. This is the agreement with the agency and one of the reasons I will pay a premium. 

Hugs to you and yours!

Cyndi

May flowers

Thank you all for your responses. It was expensive too. The cost was $30/hour for 24/7 supervision for 6 days. 

For that kind of outlay, I expected better than this. I purposely avoided an in facility placement which would have costed nothing through hospice because I wanted him to stay in his routine and I really expected better care than this. Very frustrating.

Today he is still very dehydrated and/or has a UTI. His urine smells SO strong. Still waiting for hospice to respond to that concern - going on 2 weeks now and 2 different nurses. His breath smelled strong so I tested his blood sugar too (he’s not diabetic) - it was 147 an hour after eating which is not too terribly bad I think.

May flowers

Butterfly wings, I’m sorry you just went through this too. The last facility my FIL was in for MC is just as you described. It was very hard to get through to anyone on the phone or get answers to basic questions. Turned out he was not given his meds as prescribed, had unexplained bruises, lacked grooming, and did not have the PT and Dr evaluation we requested - which was right before his fall that broke his hip and led to his coming home again.

The facility before was much better, before a staff change. 

I truly believe that many of the best caregivers and nurses decided to retire when Covid hit and all that happened since.

abc123

Dear MayFlowers, I am glad your FIL is okay! Please don't feel guilty, this is hard! I had a lot of trouble with people from agencies. I was always disappointed, always. My mom is very easy to care for, yet I could not find an experienced caregiver through an agency that I trusted. It took me a couple of months to find the perfect person. I found her by talking to the hospice therapist. She was caregiving for a patient who was soon to be placed in a facility because the family was just plain worn out. I waited two weeks for her but it was worth it. Good luck to you. I think you are a blessing to your FIL. I admire you.

mommyandme (m&m)

Unfortunately the only really good 24/7 care I’ve been able to find is by hiring caregivers we’ve gotten to know through an agency.  They already have the routine down, know mom etc… The caregiver compensation is more than the company provided yet overall I pay less.  May be unethical…but…it was so hard to manage long distance care.  

Since moving mom here almost two years ago, I’ve not left.  It is so difficult to live life outside of caregiving.  I’m so sorry you and your dear father have had this experience. 

May flowers

Abc - I’m sorry you went through this too but glad you found someone. Thank you for your kind words too. I feel like everything is a step forward 2 steps back in his care. It is like playing whack-a-mole. I really hope this contact works out - my friend really loved her. The most difficult thing at the moment is first thing in the am. The rest of the day he is pleasant and does not require anything amazing - give him a snack, a drink,  play music, hold his hand, talk to him, sit on the porch, hand him figit toys, etc. twice during morning we stand and pivot to the portable toilet which is easy as long as he’s in the gown. I tell him to give me a hug and use the hug to get him on his feet. My feet become his feet, we turn and sit. I tell him “thank you for the dance” and he always chuckles at that. That’s it. And I’m home all day and have great equipment thanks to hospice,

M&M My second choice is the first caregiver that was here, she does not normally work for them and told me she had her own company so maybe it’s ok to use her. A wonderful woman with decades of experience. She really gets dementia and was amazing with him. She would probably need help from me getting him up but I know she’d do well.

Either way, I’m home all day so it’s not like they wouldn’t have a backup. My arm is almost shot tho - I reinsured my rotator cuff and now I have tennis elbow in the same arm. I cannot heal because the turning, wiping, and things I have to do that involve reaching, just keep straining it. 

Olly_Bake

I too share your experience “lack of” quality care in the home. And unfortunately, getting a taste of it now that dad is in a nursing home again with me dreading him having to go long-term.

One week of respite in a nursing home was okay but I still found the last few days that if I had not come in for a check he would have been in dirty diapers when I knew he was able to go and sit. This time I could tell he was not getting what he needed when the hospital sent him for skilled with a catheter. So still no rest for me.

But on to home care experience. After living with us for eight months (in great shape except the few dementia issues/sleep), we did a one week respite to let dad get a feel for a nursing home. He was not liking it and I didn't really want that for him, so agreed to let him go home. So in March, he got to go home. He had a daughter that lives in his home and was to help, a hospice nurse that came twice a week, a hospice aid that came three times a week, and two Medicaid waiver workers (49 regular hours and 60 respite hours) (split shift so he would have someone most of morning and afternoon and then early evening just until bedtime. 

So how did dad end up with acute dehydration, pneumonia, low sodium, DKA, and sepsis syndrome? His oxygen was so low the day I went back and forth with hospice to let me send him to the emergency room. What the hell were they NOT doing (not really speaking of hospice)? And now that dad is back on my end, I can see the weight loss. I too was trying to get cameras in his home based off some of what hospice was seeing.

All of what you write is so heart breaking. It seems the only person our loved ones have to count on is us and that is very hard and impossible if we want to save whatever measure of health we have left.

The only other wish was that my husband would have agreed to allow dad to live with us for whatever remaining time he has. Now I wonder with this last month episode if I should have just let him go instead of getting him to the emergency room. He is now in a place where he never wanted to be.

Glad you have that support and understanding. Glad you are back to get your loved one back on the right path. I'm so sorry this has happened and hope you find that perfect worker.