Hi Everyone,
My father has been having some severe issues the past 1-2 years with multiple chronic health issues. He has been falling a lot at home & often refuses to get medical help after etc. His doctors have been doing an awful job overall managing all of his conditions & my brother and I are trying to get it straightened out & have been caring for him at home. I am petite, I have spine issues as well as other chronic health conditions & I can't lift him at all, so my brother lifts him when he falls. He has an alarm necklace which he can press to alert us when he needs something. He has been using walkers to walk and a cane but has to go upstairs to get to his bedroom which we help him do. He is laying in bed and sitting much of the time with feet up.
About 4 weeks ago he had severe abdominal pain so I took him to the er. He was there a few hours, they determined it was a hernia in his groin which had popped out. He did not want to do surgery so they pushed it back in and he came home. A week later he became suddenly weak before going up to bed and could not make it upstairs or walk well even with the walker. This has been happening on and off for months but he usually comes out of it and goes upstairs. In addition he has been having severe edema in his legs and feet which improved while at the er where they gave him more diuretics. He was on torsemide for urinary issues after he had a low sodium incident where he was in hospital a few years ago & it was increased recently by his kidney doc for the edema.
We had him sleep downstairs and he was lying on the bed peeing constantly. I put diapers on & had a drop cloth under him but the urine was leaking out & he would pee pretty much non stop in between falling asleep. He was also very confused & doesn't remember any of this now. He finally agreed to go to the er but he was so weak I had to call an ambulance. They determined there he had covid, which we are sure he contracted at the er the week before. They thought is was a mistake at first since he didn't have symptoms or he was asymptomatic. He kept testing positive- he did have a cough & fluid in his lungs but they think this was from uncontrolled high bp & something going on with his heart. He has a pace maker and afib and rhythm malfunctions. His 02 was good but dropped a bit and they put him on oxygen for a day- it went back to normal. He was in an intensive heart ward, his bp improved, he was moved to a covid ward. He is now at a rehab facility which accepts covid pos patients, is doing pt and he has been adamant every day during this whole time that he wants to come home right away.
I am barely able to roll him over to change a diaper etc. and he could not use the sit up urinal I had for the car when he was peeing non stop. The edema in his legs is much better now as he was on lasix and his bp is controlled so I am hoping things will be better now when he comes home.
So far all they do there for the pt is to sit him up for 2.5 hours per day and walk him around in a walker with help. He is improving but he still can't get up to use the toilet and he has mostly had a urinary condom this whole time and seems to be using a urinal now in bed- I think but someone helps him. I have recently injured my back again with a severe muscle twist and am having increased pain and have to rest. I am scared that we can't manage all of this and I wonder what you have done in a similar situation?
I have a mattress topper and a pillow with air pumps to help pressure sores he developed before this incident which he concealed (telling me his hemorrhoids were causing the pain), and wee pads etc. and diapers with tabs and also ordered a weeks worth of urinary bladders with a kit, and another device he can hold to urinate into a bag if he cant get up. But I am so worried they are not going to be doing what needs to be done to get him physically able to get to the bathroom on his own or with help with his walker before he comes home.
Part of being the best caregiver that you can be is admitting to yourself when he needs more care than you can provide.
Someone there I spoke to at the beginning of his stay said they were going to do bladder retraining but so far they have done none of that. This place is kind of a nightmare, although there are some nice people working there and unfortunately covid is being used as an excuse I believe to not give proper care which happened in the hospital as well where they failed to do a a full echo to determine what is going on with his heart.
It has been a true nightmare dealing with the care, no one tells you anything, you have to be on the phone non stop practically to get any info. Trying to get people to call you, trying to get someone to help your family member when they need it because they are often ignored. At the hospital they lost his slippers and a bag of medication I brought for him after he was at the er. The heart ward couldn’t find it so I called ER and a nasty woman working there hung up the phone on me! This is not the first time I have dealt with that witch, I talked with her another time when my father was at the hospital three years ago and she was just as nasty then. A day later I managed to get one of the nurses from the ward he was in to go down and look for the bag and she found that it was still in the ER. A lot of these people just need to be fired they have no business working in healthcare or for a hospital etc.
When he was moved to the rehab center which is about 40 miles away they failed to put his slippers in with his things and I had to drive to the hospital to get them and then drive the next day an hour back-and-forth to drop them off for him which was another nightmare when I arrived there.
My father called me at 5 am the first day when a nurse would not give him the correct dose of bp meds, his bp had spiked. I spoke with her and she was very hostile. I was on the phone with him at the same time, she said she was talking to the doctor. I asked to speak to the doctor who never called me back until the afternoon when I was asleep. While I was on the phone with my father the nurse came back, pretending to be all nice etc. and gave him the correct dose which a doc had approved. That wouldn’t have happened if I hadn’t been on the phone managing it.
My father spoke to the doctor the next day who is crazy and nasty. He told my father 157 which his bg had dropped to from 190/100 after being given the proper dose of bp meds was too low to fight covid. I spoke with a social worker there who called who was very hostile and rude and basically hung up the phone on me.
After all of this I called a supervisor in the hospital adjacent who said she was going to go over and talk to them and see what was going on and that she would call me back- she has never called me back. However his treatment improved after my complaint.
They are doing a better job but still not what they should be doing. There is no way I would entrust the care of anyone to any of these places even if it were an option or something we wanted to do. They only test people once per week for covid so they can keep them there for at least a week, they are making a lot of money off of this. I wanted to have him transferred to a better place which is closer as soon as he tests negative.
I first want to address the nurse and Dads blood pressure medicine. Nurses go by Doctor's orders. The doctors order must have read a certain doseage. No problem in Dad questioning it but the nurse could not give Dad more than the doctor ordered. All she could do was call the doctor who is the only one who can up the dosage. Nurses do not have that authority. That Nurse could lose her job if she went against a doctor. Too much B/P medication can also lower blood pressure to the point the person becomes weak and can't even get up off a bed.
The main cause of Edema is Congestive Heart Failure (CHF). The heart muscle is weakening and as such the body starts retaining water. Oxygen is harder to get thru the system.
If the Cardiologist in the hospital is not the one he goes to, maybe make an appointment with him/her and he/her may order the tests you want. If it was his Cardiologist that saw him, maybe a sit down face to face in his office would be a good thing. Or vertually. And when u have it both u and Dad need to be present. You both need to listen. Good or bad.
If you can not physically care for Dad, then you will need to hire someone to help. If Dad has no savings for this, you can try Medicaid and see if he fits the criteria for in home services. Office if Aging is a good place for resources.
The cardiologists were from the hospital and are probably wrong about the diagnoses, it was not chf but high bp most likely according to one of his cardiologists who was pretty useless after so many years of care, he would not speak to them. Since they have not done a full echo any diagnosis is laughable.
We don’t know how much of it was caused by covid yet as well, so he may improve. He has never had any of these problems with urination in the past. When he had the first issue with low sodium someone at the hospital was sure he needed a foley catheter for life. Again with no diagnosis. He did not need it and was fine on torsemide. I plan to take him to my cardiologist once he is home and has tested negative.
Placing my father in a home is not an option. I can see from most of the replies I am wasting my time here most probably. Regular home care is not an option either due to numerous reasons.
I have already done a lot of those things I have a condom catheter kit, new urinals, bedpans etc now, one that can either go on the toilet or by his bed etc. I can’t have a hospital bed in an exposed room because we have two cats and they could be killed by that. I can’t have any of those chairs- I had already thought about that in the past and researched them, they are not safe, not for people and certainly not for animals either. I have special handles that go around the chair that he sits in which help him get up etc. he has 3 walkers.
I am having a second banister put on the stairway. I’m hoping that if he improves with the physical therapy that will help. He has been very resistant to sleeping anywhere but his room. which he is used to. The ideal situation will be to build a room off of the living room with the bathroom.
I really wish that this was a one story house with wheel chair accessible bathrooms etc. Everyone should keep that in mind- if you’re going to spend your life in your house stairs are eventually going to be a huge issue for most people.
He will not let us call 911, I have only called an ambulance twice. Once when he was first having his heart issues and needed to eventually have a pacemaker placed and now when he was on the bed urinating for 24 hours. With Covid going on I am not going to call an ambulance to help him to get up. My brother is going to have to be the one to do it. I have researched some inflatable pillows which can help someone get up if they have fallen. I’m not sure how good they are and they are very expensive too.
I’m very exhausted and it is snowing here so I will try to reply more later.
Are you CAPABLE of the care he needs at home? It seems that he is a 24/7 care patient and while it is admirable that you want to do all of this for your dad--long term, it's just not doable.
If you seek out some NH's and watch the staff and see how much you can still be involved in his care, that may be a better fit than the situation you have going on.
For me, the edema and 'drippy legs' would be the breaking point. Having to change out the pads all night and day b/c he is oozing not just from his bladder but his skin---monitoring his meds and trying to get him to do PT--that is just too much for 1 or 2 people to handle.
And yes, COVID has made it so most facilities are run off their feet. You aren't the first poster to complain of poor service.
If you simply refuse to entertain a NH for him, then follow FunkyGrandma's advice. Make your living room or other 'main room' into a hospital room for dad. Then all his needs and stuff are right there in a very accessible place.
There are many homes, the one he is in may not be the one for him. They are definitely not a one size fits all.