My Dad is in late stage dementia. Anyone banned from seeing a loved one can relate. We were going to his ALF daily and doing the feeding and companionship as there are 24 other dementia patients and they can't always get to him. During this so far 15 day ban we were told how much he is declining, not eating or drinking, immobile and nonverbal some of which is the progression. Today we got to see him through a screen for 15 min. During that time he heard and saw me and my mom tried to get up and showed signs that both care workers said hasn't happened in a while. Anyone else going through similar? Should we push..we are the feeders and he clearly needs us for his well being. We are not causal visitors....spoke with director if he was on hospice (which may happen soon) then it's essential? Late stage dementia families need help. Screen us the way you do the worker.
Unfortunately, that means very difficult choices and sacrifices. Some of those sacrifices will be from our strongest and finest but many of those sacrifices will be from our most venerable too. We have already lost doctors, nurses, care givers, aids, and first responders to this virus. We have already lost seniors in LTC to this virus and to under treated existing conditions, and we will lose more. Our seniors in LTC will have a reduced standard of care because it is simply impossible for the overburdened staffs to provide the same level of care as when fully staffed and supported by volunteers and family members. One facility in our area has stopped daily dressing of all residents to focus on more important tasks stating extra time is needed for delivering food to individual rooms; clothes are changed as needed or following a bath. Residents who need assistance eating and/or drinking will probably be the most impacted. It hurts to imagine this reality for our seniors and enrages us to not be able to put our fingers on the scale to change this reality. I went through a short no visitors flu lock down when my father was in MC. What families are facing now is so much worse.
A high school friend recently made an emotional post on Facebook stating his 96 year old WWII veteran, past community serving/leading father _deserved_ a ventilator. I agreed, then asked him what decision he believes his father would make if there was one vent available and some father with young children also needed to be ventilated? My friend replied he knows the decision; Dad has prepared a document informing doctors he only wants the use of a ventilator if his use does not restrict access for someone else.
Personally, I have accepted a reduced level of care for my 88 year old mother, some from covid-19 restrictions and some from my own health concerns. Reduced socialization for one. No more long drives for another. Mom loves a good drive around the community but with the stay at home orders and spring allergens impact on my asthma, we are staying at home. Mom has developed some anxiety and now has periods of an hour to several hours a couple of times a week where she is anxious and I cannot talk her out of it. Normally, I would take her to the doctor and ask for some medication to help but I don't want to be anywhere near any medical facility until we are on the downside of the CV curve. I have requested a tele-visit but those are also being prioritized; anxiety is a comfort issue, people with life threatening issues like high blood pressure or kidney failure come first. Mom had her first problem with the walker this morning. She let go of the walker to reach out, lost her balance and started falling backwards. I was behind her and able to put my arms around her waist and slow her descent so she ended up just sitting on the floor and not actually hitting it. My nephew put his forearms under her shoulders and lifted her back on her feet, then kept them there loosely as she found her balance and took her first steps. Unless Mom develops an issue, we will not be seeking medical care.
Many of our seniors survived the Depression and WWII, they may be better able to accept sacrifices than we are.
It was a horrible place. Even with my mom there they were not caring for him properly. She has been his caregiver for years and has his medical power of attorney. But they wouldn't budge on letting her be there to care for him. He won't drink without constant reminding. He won't really do much of anything for anyone except her. And with them not keeping a sterile field when catheterizing him, insisting that he didn't need to be cathed even though it hadn't been done for over 24 hours and he has to have it done due to issues from bladder cancer. She didn't want him alone there with no one to watch out for his interests.
After trying for most of a day to explain that she was his caregiver and needed to be there, to no avail, she brought him home against medical advice. Took them the rest of the day to release him. (She sat outside, While they came and went for lunch. Had food delivered. Had a catering company come for something...)
They were livid. Refused to give my mom a copy of his discharge papers or his meds. And made her sit outside for hours waiting on them to bring him out. But my mom is NOT going to let my dad die alone feeling like she abandoned him. No family should have to do that. There has to be a better way.
He was so much weaker when he came home than he was when he had left the hospital. Looking sicker by the hour.
Thankfully my mom had us here. It was horrible how much my dad had declined in the few days between the time he left the hospital and the time that he left the home. He was clearly dehydrated.
He was even worse the next day. After 2 days of trying to reach his doctor or get one online we found out that the nursing home was supposed to be giving him antibiotics. They weren't. They told my mom more than once that he wasn't discharged on them. Which she thought was odd since he'd been diagnosed with pneumonia, but she trusted them. By the time we found out that he was supposed to be on them he had been without for 5 days and we had called 911 when we thought that we were going to loose him. They advised us to not bring him in yet due to the circumstances at the hospital. A few hours later we finally found out about the antibiotics and started him back on them.
Last weekend was so scary. He couldn't even stand without 2 of us holding him up. He looked gray and his eyes were cloudy. It was Tuesday night before I looked at him and realized that his color was back and his eyes bright blue again.
If he had stayed at the nursing home I have no doubt that we would be in mourning right now. He would have died alone and they would have chalked it up to being his time.
I get it, not everyone can take their loved one home at a time like this. It's a lot of work even with my mom, my husband, and I. My dad needs full time care. He can feed himself, but really that's about it. He did walk some starting Friday. Before he got so sick with a bladder infection followed by pneumonia the day after they released him from the hospital he was walking twice around the pool and to and from bed. That was after having sepsis in January and another blood infection in February. He is a strong man. But we've almost lost him several times this year. It's only my mom watching him so closely and knowing what is just sun downing and what is, something wrong, that has kept him with us.
But my advice is in a case like this, ask yourself rather you can take care of them for a month or 2 and if you can do it, go for it. I'd rather my loved one die at home with me not doing a perfect job, than dying alone where they were too overwhelmed to care for them. When my mom had her surgery I had to learn to cath my dad. Last thing I ever wanted to do. (my brother's refused) But I did it.
If you can't do it you just have to pray.
I will say a prayer for you and your family. Take care 💗.
Go to the hospital, AL , or whatever you want to name it.. Tell them you are there to treat and help LO. loved one.. Take your mask and snorkel, gloves, and fins.. and be there for your loved one... It is the right thing to do....
We are all professional when it comes to our loved ones... Some more than others, I tried... Mine died.. but that is life... And now I working on trying to keep my aunt alive and going... Yup, I trying it again...
BASICALLY WHAT I AM SAYING IS:::: YOU CANNOT FAIL IF YOU TRY... AT least you tried.. Hopefully you have back up.. .I did not :(
You are in a difficult situation. You could work toward getting a hospice referral this week but resources are slim.
It could be said there are several folks in the same situation at your father’s center. You say he is not getting fed because staff are aware you and your family feed him but it’s obvious you can’t be there. Are you saying they are ignoring him? Who told you he was in acute decline or lost 10 lbs in 15 days?
Unfortunately this is an extraordinary event. I feel your frustration. It’s a fluid situation as well & the HC providers must follow CDC recommendations & maintain some control over visitors. They have 24 people they are responsible for.
I don’t think they will make an exception for you. If I were you though I’d continue to advocate for him and speak to the manager about your concerns that your father is not getting fed. But to actually still push to get in, I think would be non-productive and disruptive.
The CMMS Task force representative said exceptions are being made for terminal patients and I believe one visitor is allowed for a hospice patient but again it depends on # of cases they know about in your area and the fact that you are in a state that has a proven higher risk of spreading the virus.
So sorry you have to go through this.
Because of the uncertainty we can't know how long temporary is, of course, which makes it harder to keep that in mind; but people are already organising themselves and we do know that we will get things sorted.
Humans are clever, cooperative organisms. Work with others to find a way through.
It's up to the facility. Sorry you have been put in such a tough situation. Remember to breathe. I'm finding a little comfort in reminding myself that most of this is 100% out of my hands.
Are you in touch with any other relatives of residents at your father's ALF? I think this might be a really good time for family members to start a support group. If you can get together responsible people who are prepared to commit to regular time and a crash course in infection control, you have the beginnings of a volunteer force. This is one of the possibilities the UK government is exploring for keeping our residential care centres running, especially if significant numbers of staff actually fall ill (as opposed to being possible carriers).
There is simply nothing to do but accept that we can’t do anything but follow the federal mandates. Sure, it sucks. I got laid off from my job at a daycare last Thursday. My son texts every day to make sure I’m doing ok. He’s worried.
Here in Cleveland, Ohio, some hospitals are allowing one visitors (after they’re screened). Special dispensation may be given for end-of-life or hospice care. A local facility hasn’t gotten their mail since Tuesday because the postal worker refuses to let his temperature be taken. It’s a strange world now.