Sorry that you didn't get the help you needed in taking care of your parents.
Jenn's MIL has IBD. Patients with IBD can have severe flareups in which they're on high doses of immune suppressants. They can get a virus in the hospital that will become life-threatening for them. That's why their doctors send them home to their families ASAP.
These patients also are often on restrictive diets that don't permit institutionalized food. There's no guarantee that these patients will improve once they're sent home. They may need repeat hospitalizations during a severe flareup.
I also have IBD. I've put my family through this. My husband and daughters know what I'm going through, so they don't complain. One of my son-in-laws doesn't understand though. He thinks I'm just aging even though I've had this disease for a long time now and most people with IBD get it by the time they're 30. He also thinks my diet is too restrictive even though it's keeping me in remission.
First, I would contact the primary doctor, then I would call the hospital and speak to the social worker, who was supposed to speak with the family, before she was released. She was the one who was "suppose" to do all this work for you, BEFORE release. It's pretty sad nowadays, where you actually have to get nasty, just to get any damn help. I went through this. I honestly called the President of the hospital and told his secty., that I was going to call the police for treating an elderly sick woman, as they had. They, ( I guess) assumed , yes, she has family, let them do it all. Well, sure, she had family, but we are not the professionals. We didn't know which way to turn. And we were always saying, "Thank you", for their help. Sad part is, we we're too nice. And I guess ignornant, of what is really necessary to care for a sick, elderly person. Well,I did meet the President if the hospital. He came to me. ( Really hard to get to the right person, believe me) Well, within 12 hours, EVERYTHING was in place, and questions were answered.( write down everything) But, I think to myself, how sad is it, that people like us, who have elderly parents, who need help, where do you go, who do you ask, ? I hate to say this , but it had me thinking of my own mortality. I will never put my family or daughter through this. I know most of you will not agree with me, but I have been through this about 3 times now. ( Elderly ill parents and relatives) I know they themselves, are not responsible for what's happening to them, but If you still can think clearly, it must be heartbreaking to them, themselves. I know I have written too long, and I am sorry for that.
I can almost guarantee she will not be permitted the 21 day rehab by medicare and if hospital messed you can almost be sure that will not be admitted by them . ...also keep in mind home care from hospital is not around clock but check ups by hospital nurse on her health issues . ,you probably also will need to hire an aide as well to help with her but more then likely she said no to rehab . .,it is a common normal practice for all hospitals to strongly suggest rehab for any senior patients . .been through that more times with both parents . ..
Subduedjoy thank you so much for giving me your insights on her stomach problems. This past hospital incident and your description does describe what she went through and makes things clearer on the recouperation. This is the worst incident she has had since she has been with us. Your insight helps me understand how she is feeling. Other than this over the years she has had a few flare ups but nothing compared to this. I'm thinking the flare ups happen shen she strays off of her strict diet during special occassions. Her diet is pretty simple so it is not hard to manage doing her food seperate from ours. I'm just hoping the rehab gets her strength back up enough for her to get to the bathroom. She is getting a lot of visits and it seems like things are going well. Dave has two older daughters that come to our house to help her as well. And they have been making trips to the rehab center for visits. So she gets lots of help. You truely never know what another person is going though unless you are in their shoes. Your description helps with understanding the weakness and end results and makes me feel better about the built up artery issue bc I was thinking and worried that maybe that was what was causing it. The one and only other time she was in the hospital since she has been with us, last year, she did not come back in the condition she came back in this time. Thank you much. And I hope you are managing what you are going though with your IBD. It sounds like you have a wonderful husband!
I also have IBD. I remember being bedridden and sleeping all the time, day and night, for a year with my last severe colon flareup. I couldn't even sit up or brush my hair during that time. I basically lay down in bed and listened to visualization meditations. My hair was a rat's nest.
I had lost so much muscle that I couldn't walk farther than the bathroom without collapsing. I had lost too much blood and water and wasn't absorbing nutrients. I was very weak. However, I could still run to the bathroom. I had to, or I wouldn't make it. In fact, sometimes I didn't.
Whenever I sat on the toilet, I would have cramps like I was giving birth. I would scream in pain only to sometimes throw up whatever I had just eaten. I also got vertigo--sometimes so much that I felt like I was going to pass out even though I was sitting.
When I got into remission, I was still sleeping a lot. Some 16+ hours a day. My body needed to heal. When I got a bit stronger, I had to force myself to get out of bed. My husband would take me to a nearby store so that I could practice walking to the store and walking back to the car. I had a hard time getting up even the smallest of curbs. I couldn't even shop. I would wait for him while he shopped. I didn't have the oxygen capacity to walk through the store.
I think that if I were 80, and not 55, it would have been even more difficult to recover, especially when I have others taking care of me.
It was difficult for my husband too. I'm on a special diet. He had to make everything from scratch. He would bring it to the hospital whenever I was hospitalized because I couldn't consume the food and beverages offered at the hospital.
It was a very painful experience for me. But I never felt so loved as when my husband took care of me. Yes, his care did make it harder for me to pull up my strength and force myself to recover when I got into remission, but he had to take care of me because I was too weak. He couldn't feel what I was feeling, so he had to trust me when I said I couldn't do it.
I don't know your MIL's condition. All I know is that if I had just gotten surgery for something IBD-related, then I'd be very weak, and I'd need time, a lot of time, to rest and heal and then recover.
I can understand, though, that your MIL might have given up on trying. My MIL was in very poor health. She felt loved when she was being taken care of. I think that at some point she just gave up on trying and allowed others to care for her instead.
I don't have a solution. You can give your MIL encouragement. You can tell her how much her doing something, such as heating up her own lunch and coffee, helps ease your and her son's burden. You can try to make her feel loved for doing things, no matter how small they are. Maybe she'll start trying to do more things so that she'll get more love and recognition.
When Dave's dad passed 5 years ago, his Mom has lived with us since. Whenever we would visit their home, since about 13 years ago, since I met my husband (we are both on our 2nd and last marriage :) ) she would be glued in her chair watching tv. I'm pretty suspicious that his Dad did a ton for his Mom now even though he worked. I'm thinking the only thing she was responsible for was meals and laundry. I know about a year or 2 before his dad passed, she had physical therapysts coming to her house to teacher her how to strengthen. Did she do it after they were done, no. When she came here we put one of those electric stair chairs so she could come up, make food, and join us as a family. She said she would help with laundry. She got here and she sat and refused to do anything. Dave makes her breakfast every day before he goes to work. He makes her dinner when he gets home (she's on a special diet and eats at specific times). She microwaves her lunch and lunch coffee. I do her laundry. She won't reorder her perscriptions or deal with any of that. She won't make her own appointments. She won't come up and spend time with the family. She gives my husband a hard time if he forgets something. But she won't pick up the phone that we pay for to call him to say, hey, you forgot, can you please.... My husband is 55 and I am 46, we are still trying to raise our kids. I don't have any problem with her living here and us helping her. But you've got to help yourself for us to help you. We've asked her and asked her to keep up her strength. Her exersice is pretty much walking down the hall to get to the bathroom. I know she has arthritis and it hurts. But then I think of my grandmother who was riddled with arthristis but worked out in her grand garden day after day until she could no longer do it, close to the end. I hope to follow my grandmother's example and this is all showing me that I need to make changes in my own life. I want to be like my grandmother. And I know what I don't want to do. With my parents I will help them. I will have the knowledge. It has started a little with my Dad last year, he had major vein blockage in his legs. I was there with him at his surgery and a lot of his appointments. I didn't mind going to his appointments bc I wrote everything down, relayed to my Mom (she still works), and kept on top of things. I will be more knowledgeable about insurance and what to look out for bc of Dave's Mom. But I got to tell you, and I'm sure everyone knows with Dave's Mom, it is stressfull as all get out. Wine has been my friend this week. I'm going to get over it and the other stressors in my life, like where is this college money and I need a car for my son to drive coming from haha. Things tend to work out . Onward and upward. Also I work from home so I could help my Dad with his appts. I can't imagine trying to do all of this and working. But certain things with Dave's Mom I won't do, can't do to keep myself sane. I am no good as a nursey person. There have been things I have said no to. At first I felt guilty but now I don't. Don't let anyone make you feel guilty. CTTN55 if your mom is capable then she should still do things for herself defenitely. I would only start until she isn't able to. I feel that Dave's Mom should have been able to do some things for herself for quite a while if she put forth some effort but it has been her choise not to. I have a nurse "friend" who deals with elderly and one time I was out to lunch with my high school "friends" and started telling her about what was going on with Dave's Mom and how she won't do anything. And her response was why do you enable her? Who allowed her to do that?" There was no sympathy or advice. She's been doing it for years and years and we inherited the problem. She messes with my husband mentally. And I am suspicious about things he says from his childhood. He def didn't have the childhood I had. So "friend" don't say those things to me, you don't live the situation. It's not all black and white. Sorry for all of the spelling errors haha.
Yes, and it's thanks to this site that I know I won't be alone. Even in her coumadin clinic appointments, when I am called in at the end for scheduling the next appointment (as I am the transportation), the nurse tells ME what changes have been made to her coumadin until the next appointment and then wants to print me a calendar of meds for me as well as my mother. I just look them in the eye and tell them that my mother lives alone, and that she is in charge of her own meds.
The last time in the ER (a year ago this weekend), they wanted me to sign for her discharge instructions. I told them she signed her own papers. And that is the way it will remain, until she is declared incompetent. I am not going to be responsible for any of her care.
CTTN, remember that you're not alone when hospital staff try to "shame" you into caring for your mother. I've been "shamed" repeatedly for not finding a facility placement for Dad. I've also pulled the "are you going to pay for the facility, b/c we can't!" line and that shuts them up.
I still feel that a CYA mentality often prevails when someone unfamiliar with our situation tells us what to do....pass it off to someone else, then they're covered and can't be accused or blamed if something goes wrong.
In all fairness though, these "shames" come more from nonmedical hospital staff than from the actual medical personnel. I used and still wonder about interlocking relationships and corporate affiliations.
Jenn, you have done a great job! I love that you and your husband effective stood up to the social worker who thought that "home nursing help" would be enough. Shame on that social worker!
I have learned SO MUCH from this site. I will be ready if the time comes when my mother is to be released from the hospital or rehab, and everyone will (possibly) try to shame me into becoming responsible for her needs.
Jenn, I'm glad the situation is working out better and more positively.
Your comment that your MIL believes adult children should care for their parents just happened to offer another interpretation of an issue that's been discussed here often.
Over time, I realized that my father would turn to me for answers, to family, friends' or medical personnel questions. And he expected care from me as well. For some reason, as I read your comment I just happened to realize that at such a critical stage in his, or other parents lives', it's not just that they expect care from an adult child, but rather that that adult child may be the closest person to them and they feel more comfort in revealing concerns, fears, anxiety, and other personal situations to their adult child than to strangers. So they tend to become more and more reliant on us, not just in interactions, but for solutions and care.
Hi BarbBrooklyn, I sat down with my husband and we called the discharge office and talked to a social worker on speaker so we could both talk. She was going to try to get us home nursing help but we were both very adamant that that wasn't going to cut it since she couldn't even stand on her own. (She couldn't go to the bathroom at all without someone helping.) That the hospital majorly let us down and that if we couldn't work there would be no house for us or my mother-in-law to live in period. While I was in the process of looking for the phone number of the administrator of the hospital bc someone said we had up to 3 days to go above the social worker, my husband called and said the social worker found her a spot in a rehabilitation center. It was such a relief. I was very grateful that we didn't have to keep fighting the issue. We took her to the pc the night before she went to rehab for the artery plaque build up and we're supposed to taker her to a cardioligist when she gets out of rehab. So it wasn't an emergency to get her back into the hospital. But if she does end up having to have a proceedure for that we now know what to look out for at discharge. Now I'm just hoping she works hard to get her leg strength back and keeps doing it. Hopefully now she'll see that we can't do all for her. She is under the mentality that her child should take care of her no matter what. My husband was traumatized this past week, not only with how we had to help his mother but with having to take her to rehab bc of how she thinks. As time goes by and things get worse I'm going to have him join this social network. Even if he doesn't write anything, just looking though the comments and answers helps out tremendously. Have a nice Sunday!
Thank you again everyone for your continued answers. Yes, Subduejoy the Chrohn's is aweful for her. She is now in a rehab center and will hopefully work with them to get stronger. This site has helped us tremendously in such a short amount of time. What a wonderful support system for caregivers and ultimately the people they care for!
I also have IBD. Crohn's is a horrific disease and can be quite debilitating. I don't know your MIL's state of health right now, but it sounds like she could be having an active flareup. We're typically given massive amounts of immune suppressants (steroids, biologics, immunologicals, ...) to curtail flares, which cause us to be at a very high risk of getting an infection that could easily become life-threatening. It's easy to pick up an infection at the hospital. That's why doctors discharge us way too early. Usually, we're in pain and still bedridden when we're discharged. Often, the medications are ineffective, and we end up back in the hospital. Your MIL could need rest right now.
Currently, I'm Racing in Orange for the Crohn's and Colitis Foundation. You can support me and this foundation by donating through my Race in Orange page at online.ccfa.org/goto/JoyEllen . More than 80 cents of every dollar goes to help find treatments and cures for Crohn's disease and ulcerative colitis and to improve the quality of life for children and adults affected by these diseases.
Whenever a loved one is in the hospital someone should always be there early in the mornings when the doctors usually make their rounds. My mom couldn't remember anything that was said but they talked to her like they thought she was understanding everything. Her doctors still do that and I guess it's to be respectful but I would never allow my mother to go to any doctor without me or my sister present. We make sure we understand what is going on and take care of things. When mom was being discharged I asked the doctor to send her to a rehab facility. She got excellent rehab there and medicare pays for it. She has also had rehab at home but that is pretty much a waste. They have to spend more time doing their paperwork on the computer than they have time for exercises. They just showed us what to do with her every day. However, if you don't have a medical power of attorney you may not be able to do anything concerning your MIL's care. Check with a lawyer and get the paperwork done if she will sign it.
Quick review of Medicare Skilled Nursing Facility qualification requirements (the last item has not been mentioned in previous posts): 1. The patient must be an admitted hospital patient with at least three overnights of in patient hospital care. 2. The patient must require skilled nursing services ordered by a physician. 3. The patient must enter a Medicare participating facility. 4. The patient may qualify for Medicare coverage if admitted to the nursing facility within 30 days of hospital discharge for the same condition for which they were hospitalized.
And why would the caregiver want access to the internet (ON HER DEVICE, remember!)? IT IS LIKELY HER LIFELINE TO THE 'REAL WORLD'. 1) She may have a real need for her children or parents to be able to reach her. 2) She might also have an 'App' to remind her of things scheduled for the couple she's caring for. 3) She may look up questions that come up about what help she can give the people she's tending. 4) Assuming she is not responsible for non-stop cleaning, cooking and laundry, and that the couple are not non-stop needy, she needs to do something other than stare into space while they are resting, sleeping, watching TV, reading (whatever they do to entertain themselves). She may be more interested in what's available instantly on-line than what's on during her spare minutes on TV or radio. (I have 3 newspaper subscriptions; and I almost always have a book on-line that I'm reading in spare minutes. (Books can be downloaded so they are always there - but having them accessible on-line saves space). 5) If she's in her teens or 20's, she probably keeps in touch with friends with a frequent quick thought. This may not be good for society (diminishing time people spend really 'with' friends), but if she's a responsible caregiver, it's momentary connections, not an interference in her duties. Of course the "IF" is a very important word.
When you call, make it clear to the hospital that this is an urgent situation and you will be forced to bring your mother-in-law to the emergency department to get the treatment she needs to regain her ability to stand on her own. Hospitals are penalized by Medicare for re-admissions. They are sensitive to that.
JennDave is the OP, by the way. :) This is a riveting process for you, you are making good progress, bless you. I hope you are reaching out to any friends that can help you in any way... getting or making food, shuttling kids to their activities, etc. Do let others know you are stressed and could use support. Best wishes.
Glad Mom is getting rehab. Healthcare is a learning thing. You learn by experience. I learned a lot working as a secretary for a Visiting Nurse association. I am really surprised they sent Mom home without talking to a family member to confirm info. Make sure next time you talk to a SW at the hospital and explain the home situation. In my experience they have never asked if a parent wanted rehab they said Mom was being sent to the hospital and gave me options. I wouldn't suggest home therapy if someone wasn't there other than Mom. These people r strangers coming into your home. Doors have to be unlocked so they can get in.
Just a heads up...sign nothing that makes you responsible for payment. Medicare pays 100% for 20 days, 21st to 100th day 50%. If she has a suppliment they may pay some of it but not all. If MIL has no money other than SS and a pension then tell admitting at rehab Mil may need to file for Medicaid if she is in longer than 20 days.
Need help, I'm glad the hospital is now focusing on rehab. Maybe someone "got the message."
You can ask for a different rehab, but I'd highly suggest you check it out first if you can. I made a big mistake once when I interviewed and toured a facility which for all practice purposes looked great. What I didn't know was that the food was inedible, my father's chart was lost, his coumadin wasn't administered and he was close to a level of hemorrhaging when I pulled him out and took him elsewhere.
Do you have any friends who can help you tour the facility? You could quickly locate a local or state ombudsperson and ask if the facility has a good or bad reputation.
Google "ombudsman" for your county, then your state, or even ask one of the hospital staff (who contacted your husband) for the number. Make sure it's stated that it's to check out a rehab center so the hospital doesn't think you're getting ready to complain about them and start circling the wagons.
Linda offers good insight on a hospitalist vs a PCP. Because we'd been through that scenario before, and once it was a terrible situation, I found a PCP who also takes point as attending physician, so the last 2 visits were managed by the PCP instead of hospitalists.
I think various hospitals are in different stages of adapting to hospitalists. My first experience with them was in Ann Arbor, with a well respected teaching hospital. It was years before local hospitals moved to use of hospitalists. Some are good; one stunk - he and his residents were so bad that I actually had to tell one that the questions she was asking were none of her business, and to leave Dad's room immediately. (She was asking how he felt about death, if he believed in a god, and more, and wouldn't he agree that he'd "had a good life" and shouldn't be resuscitated if he crashed - she was way, way out of line.)
If the patient is not listed as incompetant, they're going to discuss rehab and discharge with the patient, not the family. Unfortunately, you have to camp out at the hospital to be in the loop. I found it helpful to track down the discharge planner and outline the patient's needs and limits. They hear it all, so they're tuned in to elderly patient saying they're fine at home, and the family telling them not so much.
We found that once a patient is in hospital, a hospitalist (not the PCP) takes point. The hospitalist will do the rehab referral, usually after OT and PT have done their evals.
GardenArtist thank you so much! I have been writing everything down that you told me. I'm trying to find the number to the hospital's administrator to have my husband call just in case, want to have bases covered. My husband just called as I was writing this and said the hospital just called and said they were able to get her into a rehab center. sounds odd as that we had not called above level on them yet. The place they are looking at has 3 stars. Makes me nervouse. Can you ask for a different one? ? My husband is supposed to call the pcp and ask how bad the blockage is and should she not go to rehab or go back to the hospital. I want to make sure the blockage is bad before we lose the chance for rehab. I'm worried that the dr was bringing that up to get her back in the hospital to try and get her into rehab. I take it a pcp can not admit a patient into rehab?
Update after reading your latest posts: My advice is already too late, given the arterial blockage, but I'm leaving the post for future reference in dealing with hospitals and rehabs.
Discharge papers typically don't address rehab, at least in my experience. So omission from them really doesn't mean anything. In fact, they typically recommend follow-up visits within a week or two with a specific physician, ignoring the fact that this can be complicated if not impossible for some level of patients at rehab.
Just saw that she's heading back to a hospital; make sure the PCP understands that you want her in rehab, so she needs to be ADMITTED, not just held for observation, for 3 days in order to requalify - IF the 3 day post discharge period has expired.
You can go to ANY hospital you want if the PCP practices there. Explain the situation and tell her/him you don't want to go back to that hospital. Often doctors are admitted to practice at a few different hospitals. If he/she doesn't have privileges at another hospital, explain what happened and ask how to prevent it from happening again. And make it clear you're dissatisfied with that hospital.
With an arterial blockage, your PCP should know which hospitals have good cardiac units, and might even find a way to get you admitted, through another cardiologist, to one with a good cardiac unit.
(To learn more about this, google ":coronary artery disease" and check out the articleson the Mayo Clinic website.)
As to reviewing her chart, you can ask the PCP to get it for you, although he/she might be reluctant b/c a patient's family requesting a chart could infer that they're considering action against the hospital.
You can also request the chart from the medical records department at the hospital. Some hospitals will provide the information for free, others contract this service out. Last time I requested mine just for an ER visit, it didn't arrive from some out of state contractor until a month later.
Best to have your PCP or cardiologist (and I think she's going to need one) review the chart and bring you up to speed.
I don't know but I doubt if any online portal would have all the nurses' notes and charting, so I'm not sure you'd find what you're looking for.
Don't blame yourselves; someone should have discussed the post discharge care with you; sounds like either there were some miscommunications or the discharge planner didn't address this issue, or the hospitalist or attending failed to address the blockage.
I can't imagine anyone discharging someone with a major arterial blockage. Were there any recommendations to see a cardiologist ASAP post discharge?
My family member also lied about two key things: She lied about the type of railings she had at home in order to create a scenario which seemed more possible for her to be at home. She also lied that she had neighbors and family who would be with her pretty much all the time. Not sure who all believed her, but in addition to her insurance cutting her off... she was discharged with the belief that there was a solid support system in the home and there wasn't.
NeedHelp, reread Barb's post. Last time I went through this, a patient could be referred for rehab even if discharge had taken place, as long as the referral was w/I 3 days of discharge. I calculate that she would have until tomorrow to get a rehab referral and get in.
At this point I'd go beyond the hospital social worker/discharge planner and go right to the administrator of the hospital. I've done that before when I've had problems. The hospital we used had an ombudsperson to handle issues such as this.
Don't accept home care recommended by the hospital until you've gone through the rehab route. Home care is nominal, and based on experience as well as what you're written about this hospital, I would not be inclined to accept their recommendation.
Start calling the hospital administrator, now, then start investigating rehab companies. Some are excellent (the VNA), some are okay, and some are mediocre. After she's in rehab, ask the social worker there to give you some recommendations as well as brochures from home care companies, make checklists and start calling.
Just to show you an example of how the patient and the hospital staff can drop the ball, I have a relative who fell off a porch and broke multiple bones in her back. She raised HELL, telling everyone NOT to take her to the hospital! She had already been in and out of the hospital the previous year and viewed it as a path to the NH.
Well, they did take her to the ER and apparently she threw a big enough fit and the doctors would not admit her to the hospital. Then she wanted family to take care of her. She could barely get up and down and is heavy. None of us would have been able to lift or pull on her. 2 days later, she was in such pain we were able to get her PCP to admit her to a different hospital. She ended up being there for over a week for pain and because her afib was horrible. She tried and tried to get the hospital to discharge her to go home, frequently LYING and telling the Discharge Planner that she had family willing to stay with her 24/7 and take care of her. We each made it crystal clear to the DP that this was A LIE! Long story short, she had about 6 hospitalizations and rehab stints in one year. She is now in an ALF and doing so much better.
Weekend hospital staff is usually slack and do the bare minimum. An elderly person QUICKLY loses strength when they lay in the bed and do not move around.
Pray that she gets readmitted. And the medicare rule is that she has to spend 3 consecutive midnights in the hospital to qualify for an inpatient rehab facility. Make a LOT of noise in favor of her going to rehab both to her and the discharge planner. Talk to DP in private and tell them she is demanding to go home and has no support there and that you and spouse work full time and there is no money to pay for sitters, etc. Say whatever you have to say to make them send her to a rehab facility or you will end up looking after her and it is HARD WORK looking after a bedridden adult!
If everything described above plays out and she does go to rehab, STRESS to her that she has to work hard and get strong enough to walk with a walker to have any chance of going home.
Sorry that you didn't get the help you needed in taking care of your parents.
Jenn's MIL has IBD. Patients with IBD can have severe flareups in which they're on high doses of immune suppressants. They can get a virus in the hospital that will become life-threatening for them. That's why their doctors send them home to their families ASAP.
These patients also are often on restrictive diets that don't permit institutionalized food. There's no guarantee that these patients will improve once they're sent home. They may need repeat hospitalizations during a severe flareup.
I also have IBD. I've put my family through this. My husband and daughters know what I'm going through, so they don't complain. One of my son-in-laws doesn't understand though. He thinks I'm just aging even though I've had this disease for a long time now and most people with IBD get it by the time they're 30. He also thinks my diet is too restrictive even though it's keeping me in remission.
She was the one who was "suppose" to do all this work for you, BEFORE release.
It's pretty sad nowadays, where you actually have to get nasty, just to get any damn help. I went through this. I honestly called the President of the hospital and told his secty., that I was going to call the police for treating an elderly sick woman, as they had.
They, ( I guess) assumed , yes, she has family, let them do it all. Well, sure, she had family, but we are not the professionals. We didn't know which way to turn. And we were always saying, "Thank you", for their help.
Sad part is, we we're too nice.
And I guess ignornant, of what is really necessary to care for a sick, elderly person.
Well,I did meet the President if the hospital. He came to me.
( Really hard to get to the right person, believe me)
Well, within 12 hours, EVERYTHING was in place, and questions were answered.( write down everything)
But, I think to myself, how sad is it, that people like us, who have elderly parents, who need help, where do you go, who do you ask, ? I hate to say this , but it had me thinking of my own mortality. I will never put my family or daughter through this. I know most of you will not agree with me, but I have been through this about 3 times now. ( Elderly ill parents and relatives)
I know they themselves, are not responsible for what's happening to them, but If you still can think clearly, it must be heartbreaking to them, themselves.
I know I have written too long, and I am sorry for that.
I also have IBD. I remember being bedridden and sleeping all the time, day and night, for a year with my last severe colon flareup. I couldn't even sit up or brush my hair during that time. I basically lay down in bed and listened to visualization meditations. My hair was a rat's nest.
I had lost so much muscle that I couldn't walk farther than the bathroom without collapsing. I had lost too much blood and water and wasn't absorbing nutrients. I was very weak. However, I could still run to the bathroom. I had to, or I wouldn't make it. In fact, sometimes I didn't.
Whenever I sat on the toilet, I would have cramps like I was giving birth. I would scream in pain only to sometimes throw up whatever I had just eaten. I also got vertigo--sometimes so much that I felt like I was going to pass out even though I was sitting.
When I got into remission, I was still sleeping a lot. Some 16+ hours a day. My body needed to heal. When I got a bit stronger, I had to force myself to get out of bed. My husband would take me to a nearby store so that I could practice walking to the store and walking back to the car. I had a hard time getting up even the smallest of curbs. I couldn't even shop. I would wait for him while he shopped. I didn't have the oxygen capacity to walk through the store.
I think that if I were 80, and not 55, it would have been even more difficult to recover, especially when I have others taking care of me.
It was difficult for my husband too. I'm on a special diet. He had to make everything from scratch. He would bring it to the hospital whenever I was hospitalized because I couldn't consume the food and beverages offered at the hospital.
It was a very painful experience for me. But I never felt so loved as when my husband took care of me. Yes, his care did make it harder for me to pull up my strength and force myself to recover when I got into remission, but he had to take care of me because I was too weak. He couldn't feel what I was feeling, so he had to trust me when I said I couldn't do it.
I don't know your MIL's condition. All I know is that if I had just gotten surgery for something IBD-related, then I'd be very weak, and I'd need time, a lot of time, to rest and heal and then recover.
I can understand, though, that your MIL might have given up on trying. My MIL was in very poor health. She felt loved when she was being taken care of. I think that at some point she just gave up on trying and allowed others to care for her instead.
I don't have a solution. You can give your MIL encouragement. You can tell her how much her doing something, such as heating up her own lunch and coffee, helps ease your and her son's burden. You can try to make her feel loved for doing things, no matter how small they are. Maybe she'll start trying to do more things so that she'll get more love and recognition.
The last time in the ER (a year ago this weekend), they wanted me to sign for her discharge instructions. I told them she signed her own papers. And that is the way it will remain, until she is declared incompetent. I am not going to be responsible for any of her care.
I am the Dummy Daughter Driver. That's all.
I still feel that a CYA mentality often prevails when someone unfamiliar with our situation tells us what to do....pass it off to someone else, then they're covered and can't be accused or blamed if something goes wrong.
In all fairness though, these "shames" come more from nonmedical hospital staff than from the actual medical personnel. I used and still wonder about interlocking relationships and corporate affiliations.
I have learned SO MUCH from this site. I will be ready if the time comes when my mother is to be released from the hospital or rehab, and everyone will (possibly) try to shame me into becoming responsible for her needs.
Your comment that your MIL believes adult children should care for their parents just happened to offer another interpretation of an issue that's been discussed here often.
Over time, I realized that my father would turn to me for answers, to family, friends' or medical personnel questions. And he expected care from me as well. For some reason, as I read your comment I just happened to realize that at such a critical stage in his, or other parents lives', it's not just that they expect care from an adult child, but rather that that adult child may be the closest person to them and they feel more comfort in revealing concerns, fears, anxiety, and other personal situations to their adult child than to strangers. So they tend to become more and more reliant on us, not just in interactions, but for solutions and care.
Were you able to admit her via the "readmitted to the hospital within 30 days clause"?
I also have IBD. Crohn's is a horrific disease and can be quite debilitating. I don't know your MIL's state of health right now, but it sounds like she could be having an active flareup. We're typically given massive amounts of immune suppressants (steroids, biologics, immunologicals, ...) to curtail flares, which cause us to be at a very high risk of getting an infection that could easily become life-threatening. It's easy to pick up an infection at the hospital. That's why doctors discharge us way too early. Usually, we're in pain and still bedridden when we're discharged. Often, the medications are ineffective, and we end up back in the hospital. Your MIL could need rest right now.
Currently, I'm Racing in Orange for the Crohn's and Colitis Foundation. You can support me and this foundation by donating through my Race in Orange page at online.ccfa.org/goto/JoyEllen . More than 80 cents of every dollar goes to help find treatments and cures for Crohn's disease and ulcerative colitis and to improve the quality of life for children and adults affected by these diseases.
However, if you don't have a medical power of attorney you may not be able to do anything concerning your MIL's care. Check with a lawyer and get the paperwork done if she will sign it.
1. The patient must be an admitted hospital patient with at least three overnights of in patient hospital care.
2. The patient must require skilled nursing services ordered by a physician.
3. The patient must enter a Medicare participating facility.
4. The patient may qualify for Medicare coverage if admitted to the nursing facility within 30 days of hospital discharge for the same condition for which they were hospitalized.
IT IS LIKELY HER LIFELINE TO THE 'REAL WORLD'.
1) She may have a real need for her children or parents to be able to reach her.
2) She might also have an 'App' to remind her of things scheduled for the couple she's caring for.
3) She may look up questions that come up about what help she can give the people she's tending.
4) Assuming she is not responsible for non-stop cleaning, cooking and laundry, and that the couple are not non-stop needy, she needs to do something other than stare into space while they are resting, sleeping, watching TV, reading (whatever they do to entertain themselves). She may be more interested in what's available instantly on-line than what's on during her spare minutes on TV or radio. (I have 3 newspaper subscriptions; and I almost always have a book on-line that I'm reading in spare minutes. (Books can be downloaded so they are always there - but having them accessible on-line saves space).
5) If she's in her teens or 20's, she probably keeps in touch with friends with a frequent quick thought. This may not be good for society (diminishing time people spend really 'with' friends), but if she's a responsible caregiver, it's momentary connections, not an interference in her duties. Of course the "IF" is a very important word.
Just a heads up...sign nothing that makes you responsible for payment.
Medicare pays 100% for 20 days, 21st to 100th day 50%. If she has a suppliment they may pay some of it but not all. If MIL has no money other than SS and a pension then tell admitting at rehab Mil may need to file for Medicaid if she is in longer than 20 days.
You can ask for a different rehab, but I'd highly suggest you check it out first if you can. I made a big mistake once when I interviewed and toured a facility which for all practice purposes looked great. What I didn't know was that the food was inedible, my father's chart was lost, his coumadin wasn't administered and he was close to a level of hemorrhaging when I pulled him out and took him elsewhere.
Do you have any friends who can help you tour the facility? You could quickly locate a local or state ombudsperson and ask if the facility has a good or bad reputation.
Google "ombudsman" for your county, then your state, or even ask one of the hospital staff (who contacted your husband) for the number. Make sure it's stated that it's to check out a rehab center so the hospital doesn't think you're getting ready to complain about them and start circling the wagons.
Linda offers good insight on a hospitalist vs a PCP. Because we'd been through that scenario before, and once it was a terrible situation, I found a PCP who also takes point as attending physician, so the last 2 visits were managed by the PCP instead of hospitalists.
I think various hospitals are in different stages of adapting to hospitalists. My first experience with them was in Ann Arbor, with a well respected teaching hospital. It was years before local hospitals moved to use of hospitalists. Some are good; one stunk - he and his residents were so bad that I actually had to tell one that the questions she was asking were none of her business, and to leave Dad's room immediately. (She was asking how he felt about death, if he believed in a god, and more, and wouldn't he agree that he'd "had a good life" and shouldn't be resuscitated if he crashed - she was way, way out of line.)
We found that once a patient is in hospital, a hospitalist (not the PCP) takes point. The hospitalist will do the rehab referral, usually after OT and PT have done their evals.
Discharge papers typically don't address rehab, at least in my experience. So omission from them really doesn't mean anything. In fact, they typically recommend follow-up visits within a week or two with a specific physician, ignoring the fact that this can be complicated if not impossible for some level of patients at rehab.
Just saw that she's heading back to a hospital; make sure the PCP understands that you want her in rehab, so she needs to be ADMITTED, not just held for observation, for 3 days in order to requalify - IF the 3 day post discharge period has expired.
You can go to ANY hospital you want if the PCP practices there. Explain the situation and tell her/him you don't want to go back to that hospital. Often doctors are admitted to practice at a few different hospitals. If he/she doesn't have privileges at another hospital, explain what happened and ask how to prevent it from happening again. And make it clear you're dissatisfied with that hospital.
With an arterial blockage, your PCP should know which hospitals have good cardiac units, and might even find a way to get you admitted, through another cardiologist, to one with a good cardiac unit.
(To learn more about this, google ":coronary artery disease" and check out the articleson the Mayo Clinic website.)
As to reviewing her chart, you can ask the PCP to get it for you, although he/she might be reluctant b/c a patient's family requesting a chart could infer that they're considering action against the hospital.
You can also request the chart from the medical records department at the hospital. Some hospitals will provide the information for free, others contract this service out. Last time I requested mine just for an ER visit, it didn't arrive from some out of state contractor until a month later.
Best to have your PCP or cardiologist (and I think she's going to need one) review the chart and bring you up to speed.
I don't know but I doubt if any online portal would have all the nurses' notes and charting, so I'm not sure you'd find what you're looking for.
Don't blame yourselves; someone should have discussed the post discharge care with you; sounds like either there were some miscommunications or the discharge planner didn't address this issue, or the hospitalist or attending failed to address the blockage.
I can't imagine anyone discharging someone with a major arterial blockage. Were there any recommendations to see a cardiologist ASAP post discharge?
Good luck, and please keep us updated.
It is very common for elders to give what they believe is the "correct" answer to health professionals' questions, rather than the truthful answer.
Some health professionals are more aware of this phenomenon, and more careful to probe a little, than others.
At this point I'd go beyond the hospital social worker/discharge planner and go right to the administrator of the hospital. I've done that before when I've had problems. The hospital we used had an ombudsperson to handle issues such as this.
Don't accept home care recommended by the hospital until you've gone through the rehab route. Home care is nominal, and based on experience as well as what you're written about this hospital, I would not be inclined to accept their recommendation.
Start calling the hospital administrator, now, then start investigating rehab companies. Some are excellent (the VNA), some are okay, and some are mediocre.
After she's in rehab, ask the social worker there to give you some recommendations as well as brochures from home care companies, make checklists and start calling.
Well, they did take her to the ER and apparently she threw a big enough fit and the doctors would not admit her to the hospital. Then she wanted family to take care of her. She could barely get up and down and is heavy. None of us would have been able to lift or pull on her. 2 days later, she was in such pain we were able to get her PCP to admit her to a different hospital. She ended up being there for over a week for pain and because her afib was horrible. She tried and tried to get the hospital to discharge her to go home, frequently LYING and telling the Discharge Planner that she had family willing to stay with her 24/7 and take care of her. We each made it crystal clear to the DP that this was A LIE! Long story short, she had about 6 hospitalizations and rehab stints in one year. She is now in an ALF and doing so much better.
Weekend hospital staff is usually slack and do the bare minimum.
An elderly person QUICKLY loses strength when they lay in the bed and do not move around.
Pray that she gets readmitted. And the medicare rule is that she has to spend 3 consecutive midnights in the hospital to qualify for an inpatient rehab facility. Make a LOT of noise in favor of her going to rehab both to her and the discharge planner. Talk to DP in private and tell them she is demanding to go home and has no support there and that you and spouse work full time and there is no money to pay for sitters, etc. Say whatever you have to say to make them send her to a rehab facility or you will end up looking after her and it is HARD WORK looking after a bedridden adult!
If everything described above plays out and she does go to rehab, STRESS to her that she has to work hard and get strong enough to walk with a walker to have any chance of going home.