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Fri Feb 26, 2021, 12:13 AM

Group hug needed

I lost a family member to COVID today, our new son-in-law's father, who has been on a ventilator over a month. He was in his 50s and was the sole support of his family.

This has been a hellish week. Mom, who is 90 with dementia, had a bad fall and was hospitalized last week; she fractured her sternum and a front rib, and xrays also showed an old lower back fracture. Then she went to a nursing home Tuesday that promptly somehow let her fall 3 times in 24 hours. She was screaming so much in pain and anger that they let me see her, but revoked visiting privileges because I went to the nursing station repeatedly asking for help when she kept screaming out in pain and trying to get up to use the bathroom.

Today they got her into a wheelchair, no walking yet, and got her better pain meds. But they are worried about liability now so told us unless we hire someone to sit with her 24/7 at nearly $30 an hour they will send her back to the hospital, or to somewhere else with one-one-one 24/7 care. She cancelled her long term care insurance so nothing is covered other than the rehab center itself -- not the hourly sitter whom I did agree to hire for at least a couple of nights to be my spy on the inside and write down everything that happens. We cannot afford this much longer and she's not poor enough to qualify for Medicaid, military spouse's long-term care or anything else.

Mom is totally depressed; we tried an outside visit with plexiglass between and she's so deaf she couldn't hear me even when I shouted myself hoarse. She asks every minute or so if she can go home and is refusing to eat right now, too. She was lucid today, after hallucinating before, but that was almost worse as she's afraid, angry and basically being as cranky as possible. They probably want her gone and i don't blame them.

Now what? There are no affordable options. We cannot bring her to our home as there are stairs everywhere, two big dogs, and no spare bedroom. She is no longer allowed to live alone without 24/7 care. Before all of this, though very forgetful and starting to have occasional falls, she could walk well with a cane and even walked outside and down two steps without her cane the day before she fell and broke bones. It breaks myheart to see her this way.

Of necessity I've done almost no work the past couple of weeks so am behind on everything, and the nonprofit I run is a big concern too as there isn't enough money with no events allowed for the past year, so our reserves are running thin. I'm stressed out of my mind.

Well there is probably no advice to solve all woes; I just needed to grouse a little and maybe get some healing vibes along with any good tips on how to deal with this and maybe some distraction to have something to smile about again. I just can't stop crying.

54 replies, 1701 views

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Arrow 54 replies Author Time Post
Reply Group hug needed (Original post)
Liberty Belle Feb 26 OP
LineReply .
applegrove Feb 26 #1
Ocelot II Feb 26 #2
raging moderate Feb 26 #3
Phoenix61 Feb 26 #4
Liberty Belle Feb 26 #10
Phoenix61 Feb 26 #40
Delmette2.0 Feb 26 #43
thinkingagain Feb 26 #5
Rhiannon12866 Feb 26 #6
sprinkleeninow Feb 26 #7
summer_in_TX Feb 26 #8
Liberty Belle Feb 26 #12
Guilded Lilly Feb 26 #9
Gore1FL Feb 26 #11
sheshe2 Feb 26 #13
Marie Marie Feb 26 #14
Blue Owl Feb 26 #15
Ka-Dinh Oy Feb 26 #16
ancianita Feb 26 #17
pazzyanne Feb 26 #18
chillfactor Feb 26 #19
AllyCat Feb 26 #20
LisaL Feb 26 #44
AllyCat Feb 26 #49
Liberty Belle Feb 27 #53
AKwannabe Feb 26 #21
Ponietz Feb 26 #22
Coventina Feb 26 #23
StarryNite Feb 26 #24
Liberty Belle Feb 26 #32
Coventina Feb 26 #34
StarryNite Feb 26 #25
MyMission Feb 26 #26
FuzzyRabbit Feb 26 #27
TygrBright Feb 26 #28
DarthDem Feb 26 #29
mahina Feb 26 #30
Liberty Belle Feb 26 #33
mahina Feb 26 #36
stage left Feb 26 #31
CaptainTruth Feb 26 #35
handmade34 Feb 26 #37
Hekate Feb 26 #38
TreasonousBastard Feb 26 #39
Fla Dem Feb 26 #41
Aristus Feb 26 #42
LisaL Feb 26 #45
Liberty Belle Feb 27 #51
hamsterjill Feb 26 #46
Nevilledog Feb 26 #47
Ohio Joe Feb 26 #48
tblue37 Feb 26 #50
Liberty Belle Feb 27 #54
Liberty Belle Feb 27 #52

Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:15 AM

1. .

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:16 AM

2. I'm so sorry you and your mom are having such a tough time.

Dealing with the care of an ailing elderly parent isn't easy...

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:18 AM

3. I am so sorry to hear about all your troubles.

It does sound as though you are helping a lot of people with a lot of serious problems, and you are doing a good job!

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:18 AM

4. Talk to her doctor about getting a referral for

hospice. At her age with an Alzheimerís diagnosis she should qualify. Theyíll know all the local service providers. They were great with my mom. I wish Iíd gotten them on board sooner.

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Response to Phoenix61 (Reply #4)

Fri Feb 26, 2021, 12:36 AM

10. Hospice would be good but today Mom was totally lucid when talking to the doctor

for all of a few minutes, and said she had no pain. She managed to get the month and year right, and a few other key things.

Never mind that she'll ask the same questions ever few seconds and doesn't understand where she is. So I'm doubtful we could get him to say she's in the last 6 months of life just yet.

Even with hospice, they can't just start a morphine drip when someone is still this feisty and not in enough consistent pain. I'm sure it will come to that soon and it this point it would be a blessing.

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Response to Liberty Belle (Reply #10)

Fri Feb 26, 2021, 09:23 AM

40. The 6month thing isn't a rule which surprised me.

They have nurses who will come by and do well visits. They have a social worker who will come by and provide counseling. It was great to have someone to talk to who really understood how hard it was to take care of mom. The best part is help is a phone call away if you need anything. They provide so much more than people realize.

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Response to Liberty Belle (Reply #10)

Fri Feb 26, 2021, 12:54 PM

43. I understand some of what you are going through.

My Mom had several trips to the hospital in an ambulance. The EMT's would ask her if she wanted something for the pain AFTER she was in the ambulance. The trip to the ER was 3 blocks. When she was finally seen by a doctor she was feeling better and we had to take her home and schedule an appointment with her doctor who was not so great and didn't take into consideration the pain meds. grrrrrrr.

Finally she agreed to Hospice. It was just the solution we needed. I don't know if the Rehab facility would hand over control to Hospice but you need help and Hospice should be able to tell you what they can help with.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:22 AM

5. Hug

Hug hug hug hug
Because some days more than one us needed.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:23 AM

6. Wow, I am so sorry that you have so much on your plate right now

Your Mom's dilemma would be tough at any time, but with this pandemic and personnel stretched thin, it's especially worrisome right now. All I can offer are healing DU vibes for both you and your Mom. I hope that there's a safer place for her which would take some of the stress off of you.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:24 AM

7. My heart cries for you tonight. I said prayers. ❤

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:31 AM

8. I'm so sorry.



I wonder if you and your mother can talk by phone while looking at each other through the glass. I know she's hard of hearing but the glass window is making it impossible to talk.

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Response to summer_in_TX (Reply #8)

Fri Feb 26, 2021, 12:41 AM

12. Good thought, that might work through the window.

There is a phone in her room. She hasn't had a cell phone for a while since she forgot how to use it, forgot to charge it, and then forgot to pay the bill.

Small things to be glad of, the home does have "Zoom" calls which we're going to try next; she will need help but at least we can see each other, sort of.

I'm also glad we managed to stave off putting her into a nursing home at least until after they opened it up to outside and window visits, and after she had her first vaccine. She will get the second one Saturday. I hope it doesn't make her sick, but the first one didn't.

I'm also glad they just recently started allowing hired "sitters" which were not allowed due to COVID until everyone there got at least the first vaccine. So at least we have a spy to report back to us for a couple of days.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:35 AM

9. Sending a massive hug laced heavily with strength and courage. Damn.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:39 AM

11. Hugs given

I am sorry for your situation.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:43 AM

13. I am so sorry for your loss.

I do mom (94) care 24/7 with my sister. My mom doesn't have dementia, your situation is more dire. It is all the harder with COVID.

Healing thoughts to you and yours.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:48 AM

14. Tough situation and I am so sorry for all that you are going through.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:56 AM

15. Deep breaths... Be strong...

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 12:56 AM

16. Hugs for you.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 01:00 AM

17. Big Hug!

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 01:18 AM

18. So sorry.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 01:22 AM

19. .....

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 01:24 AM

20. I'm sorry LB. I feel like any rehab or LTC is terrible under COVID.

I hope you Abe your sweet momma get some relief soon.

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Response to AllyCat (Reply #20)

Fri Feb 26, 2021, 01:37 PM

44. It's not as bad now, since residents of LTC facilities should be vaccinated by now.

At least they have been in my state.

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Response to LisaL (Reply #44)

Fri Feb 26, 2021, 06:46 PM

49. Still no visits in Wisconsin.

Ridiculous.

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Response to AllyCat (Reply #49)

Sat Feb 27, 2021, 09:03 PM

53. Outrageous. Call your legislators every single day until that changes.

Once nursing home staff and residents are vaccinated especially there is no reason not to allow at least outdoor or through the window visits, or even allow in family members who have been vaccinated.

It's crazy that this home won't allow me inside or even my daughter, who had both vaccines, but will allow in a paid sitter who goes from patient to patient at different facilities and is more apt to pass along COVID than us.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 01:31 AM

21. ...



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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 01:47 AM

22. Sending 🙏 for your family's well-being

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 01:53 AM

23. I lost my mom to dementia.......10 years before she died.

I understand your pain and stress.
There's really nothing like it.

Just massive, massive hugs from me.

I don't know where you live, but for my family ALTCS (Arizona Long Term Care System) was a life saver (hers and ours). Maybe look and see if there is something similar in your state?

Much love,

Coventina

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Response to Coventina (Reply #23)

Fri Feb 26, 2021, 02:07 AM

24. My mother-in-law who had Alzheimer's was also on ALTCS.

It was a life saver for our family too.

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Response to Coventina (Reply #23)

Fri Feb 26, 2021, 02:42 AM

32. Thanks, I don't think California has anything like this. I'd like to hear more

about the AZ model. Maybe it's something needed here.

There are long-term care facilities but they cost around $10,000 a month or more -- you need long term care coverage for this, which unfortunately Mom cancelled before we learned about it and the company refused to reverse the action.

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Response to Liberty Belle (Reply #32)

Fri Feb 26, 2021, 02:49 AM

34. I was trying to find a good webpage for you

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 02:09 AM

25. I'm so sorry for all you are going through.

Sending you a hug and good, healing vibes.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 02:11 AM

26. There is a program for veterans and spouses

It is called aid and attendance. https://www.veteranaid.org/aid-and-attendance-eligibility.php
The website also has information on resources that might be helpful.

A neighbor told me about it many years ago, and her parents were given assistance for their care when they moved to a nursing home. Often there is a person at the "local" VA who can help with logistics. I'm not sure if this is the program you said she is not eligible for because she is not poor enough; there are various programs through the VA. If she does have assets or resources then you/she should consider using them for her care, rather than depleting your resources.

I went through this with my widowed mother, who also had some assets and resources, although certainly not a lot. I am an only child, and decided that whatever my parents had saved and acquired for their old age should be used to care for my mother. I didn't inherit much, but I did inherit their condo because she passed away before I was forced to sell it. She got excellent care in the final years of her life, and I am grateful they had the resources to help provide that care. Before she moved out of her home into a care facility I had some part time caregivers with her when I was working and unavailable. One woman was recommended by her financial advisor. Another was a nursing student who could be with her in the evenings. Agencies charge much more than individuals, because they get a cut and their employees are presumably vetted and therefore trustworthy. My mother was also in rehab for a period of time, which actually had some people living there as they would in a nursing home, so that might be another option.

I sympathize with your situation, and am sending you big virtual hugs. There were many times when I felt like I was going to implode, or succumb to exhaustion trying to manage her care on my own and protect her resources. Using her assets to care for her relieved a lot of that, but it's still so hard to see a parent decline. I can imagine how being banned from seeing her, and the stress of her care is breaking your heart. I remember how I often put my own care and well being on hold. Sending healing vibes to you both.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 02:25 AM

27. Praying for your mom.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 02:27 AM

28. Holding you in my heart... may strength find you and sustain you. n/t

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 02:29 AM

29. Oh, I'm so very, very sorry.


May you find the strength within you to move ahead. I'm so sorry.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 02:30 AM

30. Damn.

I take these when I feel stress getting to me beyond a safe level. Iíll send you a bottle if youíd like. These are the only vites that I can take even on an empty stomach which helps because I canít eat when stress has me. And I donít do supplements- except these. https://www.newchapter.com/products/perfect-calm-multivitamin/?gclid=Cj0KCQiAst2BBhDJARIsAGo2ldXcUie6lq6sCiGF8gVKiR98qtSREH2Z9gP4Xf2-P8lCi7dyC-t47KAaAoq4EALw_wcB

I would never have bought them in a million years but a friend sent me some when I was in the soup. I donít take them regularly, but when I need them, they help.

My other go-to is poi but I bet that wouldnít do much for you. Lmk if Iím wrong.

Hot Epsom salts baths help. The magnesium is magic.

Remember that stress hormones can be diluted by drinking tons of water.

Put your right hand on your heart skin to skin and breathe deep. I donít know why but it helps.

Good luck sister.

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Response to mahina (Reply #30)

Fri Feb 26, 2021, 02:47 AM

33. That's sweet of you. However

I recently began occasionally using cannabis gummies, which both control pain and have a relaxation effect that helps me sleep. I started this after I was already staying away from the chiropractor and massage therapist for my bad back due to COVID fears,and then I got skin cancer on my scalp and wound up with staples and stitches. The gummies worked like magic, at the lowest dose which has no real "buzz," maybe about the same as a half glass of wine but with very positive effects.

I use it maybe 3 times a week, in between I use Motrin or a glass of wine to avoid overuse of anything. Though I started taking it for the cancer treatment pain, it worked amazingly well on my back pain that I'd suffered with for years.

And now, it helps with this latest stress. I'm for anything safe and legal that works, and fortunately this is legal in CA.

Good reminder on drinking lots of water when stressed; I do forget that sometimes.

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Response to Liberty Belle (Reply #33)

Fri Feb 26, 2021, 03:02 AM

36. Sounds like a good plan.

Iíll be thinking of you. Good luck

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 02:39 AM

31. Liberty Belle

I am so terribly sorry for your loss and all that you are going through right now. Hugging you as hard as I can.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 02:59 AM

35. I'm so so sorry...

I wish I could do something to help...

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 03:14 AM

37. ...

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 03:24 AM

38. Liberty Belle



Iíll be thinking of you.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 08:29 AM

39. This is saddening to read and to know such situations exist...

Unhappily, I have no advice or assistance to offer, but I do hope you get through this.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 11:41 AM

41. How totally stressful and sad for both you and your Mom.

Growing old is no walk in the park. It's tough on both the parents and kids. I lost both my parents before there were any real problems with their mobility or mental abilities. But my Mom passed at way too early an age of 62. I can't imagine the anxiety and stress you're going through. I hope the days ahead are more charitable to you and your Mom.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 11:42 AM

42. ...

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 01:39 PM

45. Why did she cancel her long term care insurance?

Because of her dementia? Is there any way to fight that?

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Response to LisaL (Reply #45)

Sat Feb 27, 2021, 08:51 PM

51. Yes, dementia, we are fighting it but no likely to win

and even if we did, Mom never updated the policy for inflation so it would only cover $110 a day. The cost of skilled nursing care in our area averages around $660 a day.

To get that reinstated a doctor would have to write a letter saying she had dementia before she cancelled this in 2018. She didn't take or flunk an Alzheimer's test until 2019, though she was obviously not in her right mind for several years before that. There were two earlier doctors we've contacted; both have to dig out records from storage.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 01:47 PM

46. I'm so sorry.

I wish I could help. Wish I could waive a magic wand and make things better for everyone. Iím so tired of the suffering.

Please accept a virtual hug from me, along with my prayers (as is my practice, so I hope itís not offensive to you) for you, your mom and the whole situation.

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 02:44 PM

47. ...

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 03:52 PM

48. K & R - nt

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Response to Liberty Belle (Original post)

Fri Feb 26, 2021, 06:54 PM

50. Maybe set up a GoFundMe to help with the expenses.

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Response to tblue37 (Reply #50)

Sat Feb 27, 2021, 09:13 PM

54. She would need $250,000 for a year of round-the-clock care at home,

or at least $60,000 if sent to a board-and-care facility.

I don't know many people who would donate -- she outlived all her friends and most of her immediate family, and those left are struggling financially themselves.

But I will consider it, if this goes on much longer.

Sad to have to rely on the kindness of strangers to assure proper care for our seniors.

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Response to Liberty Belle (Original post)

Sat Feb 27, 2021, 09:01 PM

52. Updates on Mom

Some good news: She was able to walk 10 steps today with a walker and a lot of coaxing. So she may be able to get strong enough to not be bedridden. That's after days of refusing to try and take a step. She is due to get her second COVID shot today, too.

The 24/7 caregiver sitter aka "spy" we hired has been worth the money though we can't afford it much longer. She can translate when we talk to Mom through the window, and alerted us to a possible bowel obstruction that's causing Mom pain every time she has to go, which apparently is about every 15 minutes during the daytime; enemas and laxatives haven't helped so the doctor finally ordered a scan.

Mom is relatively lucid though with zero short term memory.

They moved her to a room in front of the nursing station, with a pad by the bed to lessen the chance of injury if she tries to get up on her own.

I am hoping if she can start walking and get the bowel pain solved, which is the reason she keeps trying to get up and go to the bathroom, maybe she can sleep through the night and we can scale back the number of hours the sitter has to be there, until we can come up with a better long term scenario.

She is in quarantine for another 9 days; after that she can go into the main rehab facility where there's equipment like stationary bikes to help her get stronger. Right now she can only have physical therapy in the room, which is limited.

She is still eating very little, and would probably eat nothing if not for the sitter. I think even if Mom is doing better on other things I would still hire her 5 hours a day (the minimum) for a little longer to help coax her to eat and drink, and translate for our daily visits (ie talk loudly into Mom's ear so she knows what we say to her)

The money is still an an enormous concern. Maybe I should go buy a lottery ticket; there seems to be no other way to afford the care she really needs.

Damn to hell the bastard Republicans who have blocked universal healthcare for all, which is what we sorely need.

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