News of Jeanie

[Virginia]

Rose, I believe Jeanie told me that she ordered her LDN herself and has it sent to Jim who brings it to her and leaves it at the front desk. So, I think she does get it. I hesitate to say this, but since she is in bed 24/7 I don't know why she bothers with the LDN unless it helps her sleep.

You are right she doesn't have any say over who her roommate is, but she did get herself moved to another room when the other one got so bad. She has to wait for a room to come open with a bed beside the window. She will not take anything else. She is pretty firm on some things.

[Virginia]

Well, I had a surprise this evening. My phone rang and I started not to answer it because it was an out of state area code. All of a sudden I realized that I knew that number. So, of course I answered it and there was Jeanie. She was calling from her cell phone.

She is doing good. She really did sound real good. She still has the same roommate, but if she minds her much now she didn't let on. She is feeling better now.

Restrictions have been lifted there and Andy and Jim are now able to come in to see her. Jim brought Lacy again, so she enjoyed that. Her sister-in-law who was getting her books had knee surgery and still cannot drive so she is not able to go see her, but she is ordering Jeanie books from Amazon. She had had that knee surgery when I called Jeanie in early September, but has had a few problems with it. Jeanie assured me she was getting books to read. I have offered to get some more for her from Amazon, but her sister-in-law knows more about what she likes.

Of course she wanted to know about everyone on here and I was sitting in my living room, and wasn't at my computer, but I told her as much as I could remember. She wants everyone to know she is still thinking of them and misses everyone, even though she is more adjusted and doing very well.

She said she was getting worried about me because I haven't called in awhile. I told her she had been heavy on my mind for the past two weeks and I kept thinking that I would call and different things, mostly pertaining to the house kept coming up, but I promised not to let it be so long the next time.

That's about it.

[agate]

How nice to have news of Jeanie and to know that she's feeling well enough to make calls!

Maybe eventually she'll be back among us.

Thank you, Virginia, for staying in touch with her!

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Virginia ~

That is so wonderful that Jeanie called you! Thank you for sharing your conversation with us.

While I am happy for Jeanie that she can see Andy and Jim and Lacy, none of them are vaccinated. This is Florida, where the Governor doesn't care about COVID, or vaccines, or masks, or mandates, etc. So, of course the restrictions have been lifted following his lead. I can't help but worry about exposure for Jeanie and other patients, as well as staff.

It seems that Jeanie has accepted her situation, especially now that her home is sold, and she's making the best of it. She has a strong faith, which I am sure is sustaining her.

Many prayers for Jeanie to continue to be comfortable, safe and well.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[Virginia]

You are right Rose, Jeanie does have a strong faith and this has really helped her a lot. She also is reading a lot of romance type novels, that don't make you think, but keep your mind occupied. I think she has gotten to know the staff and they have gotten to know her. Having been a Nurse, she knows what to ask for and how things should be done. I expect the staff has learned that she knows some medicine and is obliging in helping her.

It helps also that Andy and Jim are now able to get in to see her. I agree about the vaccinations, but I really don't go there with her because it wouldn't do any good. She is going to keep believing as her sons do which is natural.

I do believe her that she is satisfied that the house is gone. She no longer has that burden on her and she no longer has to worry about falling while being alone, or another broken bone.

I am still fighting, but Jeanie had been on a scooter for many years, in fact every since I have known her. So there is a lot of difference, but I know how I felt when I couldn't get up off the floor that one time and had to call 911. It was scary and humiliating. Yet, for me I still want to be in my home. We are different in that way.

I am just happy that she is now satisfied and doesn't hate this place. The food is still good and that's more than DAR and Renee could say for the place they are in.

Life can be hard as all of us on here know, and our tolerance for it differs.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Virginia ~

I completely understand that you don't want to discuss vaccinations with Jeanie. I wouldn't either. Andy and Jim probably feel that they are right, and the proof is that they haven't gotten COVID yet. YET is the operative word. My concern is that one of them could have COVID, before symptoms appear, and give it to Jeanie. I hope they all wear masks, when they visit.

If appropriate home health care was available for Jeanie, she wouldn't have to worry about being alone and falling in her home. But, that option wasn't available to her.

Florida has In Home Supportive Services (IHSS) for persons, who are disabled and/or elderly. IHSS is one of the programs, which allowed me to be paid for Jon's and Michael's care at home. IHSS recipients qualify through SSI and Medicaid. If Jeanie qualified, she could have had a paid caregiver for up to 9 hours/day 7 days a week. Medicaid would pay for home health nurses, PTs, wound care nurses, and supplies.

In home care for Seniors and people with disabilities is included in President Biden's human infrastructure plan. It is one of the few items spared in the paring back of the bill. If the bill passes through Congress, there will be more options for us with in home care.

Nursing homes are a giant business, and they are not regulated properly. The cost of out of home care is far more expensive than the cost of in home care. I've been involved in this for about 40 years, advocating for the rights of disabled and elderly people to live in their own homes. I won a fair hearing before an administrative law judge against the county social services agency to obtain the maximum number of IHSS hours for my sons' care. Then, I represented parents of disabled children in their fair hearings, and we all prevailed. Every year we were in the IHSS program, I had to fight for Jon and Michael to continue receiving the maximum hours for their care. They were completely dependent with a progressive disease, but I had to prove that they still needed care.

It is long overdue for our tax dollars to go toward in home care rather than into the pockets of nursing facility corporation CEOs.

Many studies have proven that in home care is far superior to out of home care in every respect, particularly with regard to quality of life. Let's all hope that Congress passes this bill, and that it is implemented quickly to give all of us the option to live at home safely.

Jeanie and her scooter and van. Remember when she drove to her reunion?! I was just in awe of her being able to do that!

Thank you, Virginia, as always for sharing your conversations with Jeanie with us.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[Virginia]

Rose, I was also in awe of Jeanie driving that van to her reunion. I have laughed and told her that on the phone. She has admitted that some things were not good, but is glad she went because she got to see her brother for the last time for a few hours. He has since died.

I certainly agree about the "in home care" for those of us who are disabled. It has been a lot on my mind lately and I have just been hoping that this would stay in the bill, and now that it will pass. I doubt that it would be as many hours or days as we need, but it would be a lot better than what we are getting now. I am still hoping for this to go through.

It was good that your sons had your ability to fight for them, otherwise I hate to think of what would have happened to them. You know you did ALL you could do and that was a lot. I am so glad they had you and Jim to care for them.

[agate]

I spoke with Jeanie today and she seemed to be in good spirits. She says that she's on her 3d or 4th roommate, and the current situation doesn't sound ideal but she couldn't say much about it under the circumstances.

She says it is hard to rest at night there because of the frequent interruptions and the noise.

But she says that the food is often good. About two days a week it's not so good but she says they will probably do a Thanksgiving dinner.

Her sons and daughter-in-law are able to come and visit, and sometimes Lacy the dog visits too and lies on her bed, knows perfectly well who she is.

Everybody there has to be tested daily for COVID, and she says that she can't have the vaccine. Her doctor doesn't want her to have it because she had a bad reaction to a flu shot, and he/she thinks it would be too risky.

She goes to get her hair done there at the facility once a month, and that's the only time when she goes anywhere. It means using a Hoyer lift, and the hair treatment costs $75. She says she was paying $25 for the same hair treatment when she was out on her own.

That strikes me as gouging. She also mentioned that some of the people who handle her are rough and hurt her even though she has asked them to go easy on the painful spots. I suggested a social services coordinator or patient advocate, and she has complained to such a person a couple of times and won't hesitate to do so again.

I'm really glad she's on top of the situation and fully aware that (as she put it) you have to be your own advocate.

She asked about people here and would like to say Hello to all--and she is remembering all of us in her prayers.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

agate ~

Thank you so much for sharing your conversation with Jeanie with us. It is comforting to know that she is still holding on with determination and courage.

I am curious about the correlation between her adverse reaction to a flu shot and having the COVID vaccine. I don't know the chemical make up of either one, but I do know that Pfizer and Moderna are mRNA, and that flu shots sometimes have a non-live virus in them. Perhaps there is a connection between the excipients, such as polyethylene glycol, which is in nearly everything.

Having Lacy in her lap must be so comforting for both of them. It's great that Lacy is calm in that environment too.

Regarding pain during movement, unfortunately, as we all know, the less we move, the more painful it is to move. Using a Hoyer lift requires turning a person on the side to slide/snug the sling under the person, then turn the person on the other side to pull out the rest of the sling. If the sling isn't on properly, it is dangerous and uncomfortable. When you feel vulnerable anyway, it is worse when you are swinging on that sling above the floor.

I know from years of experience with Jonathan that however gentle we were, turning him and lifting him caused pain. So much pain that he would push against us to prevent being turned. While being transported, he was brave, but clearly uncomfortable. Once in his recliner, he was happy, but transferring him back to bed repeated the painful process.

Additionally, Hoyer is the least expensive and efficient lift in the industry. We had/have a Liko lift, which is superior in many ways. So, of course all "rehab" facilities use Hoyer lifts.

Having said all of that, I am certain that Jeanie is not being treated as gently and sensitively as she should be, as she deserves to be, as well as all of us should and deserve to be treated. The staff in her facility (in all facilities) are not properly trained or supervised, and lapses in care occur without anyone batting an eye. Complaints are ignored. This is a FOR PROFIT BUSINESS.

The only way that this long saga of institutionalization of persons, who are elderly and/or disabled, will end is if our government follows through on its promise to provide us with appropriate in home care. History has proven that in home care is less costly and provides a higher level of quality of life than institutionalization.

"Rehab Center" is a marketing tool to avoid the stigma of "nursing home." Rehab implies that your time there will be brief as you recover. How often is that true?

We have to look at what is happening now and think about the future. The time is long past for appropriate and effective in home care to be the norm in our society. Jeanie deserves much better care than she is receiving. That applies to all of our friends, who are in a "rehab center" right now. There is a better way to provide care and healing, and that is at home.

I apologize for my outrage and exuberance, but I have been fighting for decades for in home care. I just want this to be a reachable and feasible option for everyone.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[agate]

No need to apologize, Rose! I wish more people would set up such a hue and cry about the whole situation that changes would be made. Drastic changes.

Why on earth, when someone clearly desperately needs sleep and rest to speed healing and maintain health, is that person having to put up with constant interruptions all night long and roommates who won't pipe down?

Yes, it's all about money. But why are those who are in these "rehab" places regarded as such expendable, second-class citizens?

Interesting point about the term "rehab facility." I've noticed how some of the places are called "nursing homes" and others are "rehab centers" even though I can't see any real difference. Except that, as you say, "rehab center" suggests hope, a chance of getting out of there. And I've noticed that quite a few people (neighbors I've known) do have only temporary stays.

But Jeanie is reconciled to being there for the duration. At least it sounds as if the daughter-in-law is now able to bring her books.

[Virginia]

Thanks for sharing with us Agate. I am sorry this roommate is not so great. I think it is the same one she had the last time I called, if so she is better than the others but still not really great.

Rose, what I had gleaned about the vaccine is that Jeanie came up with this idea of not taking it due to her sons not wanting it. She had a reaction from a flu shot she took many years ago and her then Doctor told her not to take any more. She told me she doesn't have that Doctor now and hasn't seen him in years. She said she doesn't even know where he is now. That's the reason I am pretty sure she doesn't want to take it because of her sons. I am glad they are doing daily testing.

I am glad she has her mind and knows how to advocate for herself. I suggested earplugs for the noise, but she said she has some and they really don't work.

It's amazing how cheerful she is when I have called.. I don't believe she is faking it because I talked to her a few times at home after she got out of that first rehab she was in, and she could snap at you a little if things were not rignt.

[agate]

I thought she sounded really upbeat too, Virginia, or as upbeat as anyone could possibly be in her situation.

She mentioned that she'd used up all of the PT she's entitled to. I believe that as of the first of the year she'd be entitled to more PT but maybe that policy isn't the way it works if you're in a rehab place.

She said that all of the PT in the world isn't going to help the one leg she can't move. That doesn't sound very upbeat but her tone of voice was just matter-of-fact, as if she's accepted the way things are and is making the best of it.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

Virginia ~

Thank you for clarifying about the vaccine. I don't know what constitutes a bad reaction to a flu shot, unless it entails getting the flu or flu like symptoms after the shot. If this was many years ago, then I would imagine that flu shots have improved. Jeanie may have decided that once she was told not to have any more flu shots that would apply to any vaccine.

Our PCP convinced Jim to have a pneumonia vaccine. He was sick in bed for 10 days after that vaccine. I attributed it to the fact that he received the vaccine, while he was having a severe RA flare. The RA flare was the reason he went to the doctor.

I'm thankful that she hasn't caught COVID, and I pray that will continue to be so for her and her family.

agate ~

From the 1970s through the 1990s, throngs of people with disabilities, caregivers, advocates, attorneys, civil rights activists fought tirelessly to end institutionalization. The Olmstead Act closed many institutions for people with developmental disabilities and relocated the residents to community placements. PL 94-147 ensured "a free and appropriate education in the least restrictive environment." That law became Individual with Disabilities Education Act (IDEA). The ADA was passed.

Given those successes, in home care was addressed. But the power of the nursing home corporations and their lobbyists drowned out our hue and cry. Since then, it has festered, but now it is being addressed again under President Biden's plan.

It is impossible to sleep or rest in any hospital or nursing home/rehab center setting. I can testify to that having watched many loved ones suffer from sleep deprivation. I often told the "Turning Crew," who arrived promptly every two hours to turn Jon or Michael to come back later, as they were sleeping. "But he has to be turned every 2 hours," they protested.

"He also has to sleep. He isn't going to get well without sleep. And he may have a seizure. Come back in 2 hours please."

Our family is a testament to the multitude of benefits from in home care. The System provided my sons with the option of staying at home and allowed me to be their paid caregiver. For them, as well as for Jim, we were given health care professional support, with nursing, therapists, podiatrist, our GI visited annually to change Jon's G tube, purchasing supplies and equipment.

All of this should be possible for everyone. You may not have a family member to provide your care, but you can hire careproviders, who are paid through a government program, and who have been fingerprinted and subjected to a background check. I recommend that everyone visit your county social services website to determine what is available currently for in home care. Plan for the future, and then advocate for your right to stay in your home to receive care. We have to be in charge of our destiny.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[agate]

I called Jeanie today to let her know Virginia has been in the hospital but hasn't forgotten about her.

She couldn't hear me on the phone but her DIL Carla happened to be there and I gave the message to her, and she'll transmit it to Jeanie. She said that Jeanie has had a UTI but that she's better now.

[Earth Mother 2 Angels]

((((((Hugs to All)))))) ~

agate ~

Thank you so much for calling Jeanie. It's unfortunate that she couldn't hear you, but very fortunate that Carla was there to talk to you and tell you about Jeanie, as well as relay to Jeanie about Virginia.

What is it with Seniors and UTIs? It seems to be such a common problem among our demographic. As we age, I suppose our bladders and kidneys age. There is probably plenty of medical info on the internet about this subject, but I'm too tired to search for it. It just seems so unfair that we work all of our lives, pay taxes, contribute to society, and when we get up in years, all kinds of unpleasant things happen to us. Then, we (or someone else) has to fight for everything we need to recover.

It would be so wonderful if Jeanie could be in a private room, which I know is non-existent in a "rehab" center. Unfortunately, nay, tragically, President Biden's bill, which included benefits for Seniors and people with disabling conditions, hit a wall with a selfish Senator. There goes our in home care support. We all get a lump of coal in our stocking for Christmas.

Many prayers for you agate, for Jeanie, Virginia, and all of our dear friends here.

Love & Light,

❤️❤️❤️❤️

Rose

*Virtual Hugs Are Germ-Free!


THANKS!

[SuzE-Q]

And to you, too, Rose. May you have a safe, peaceful and lovely holiday. I am so glad you joined this group, it wouldn't be the same without your wise words, your support and you sharing your life here with us. You are part of this family!