What to do when parent becomes almost a child?
December 4, 2010 1:36 PM Subscribe
Aging parent help - multi-part tl;dr, but please still take a look.
Quick summary: Dad (age 86, will turn 87 next April) was taken to ER the Tuesday before Thanksgiving due to severe shortness of breath; paramedics didn't detect any heart trouble and informed us that it was probably pneumonia. However, after many different blood tests at the hospital it was determined that Dad had suffered a heart attack (his heart enzymes were something like 80+). Dad's condition deteriorated and he was intubated, and we were prepared for the worst, but then he sort-of recovered a little bit. And from here, the plot thickens....
Dad was on the respirator in the CICU Tuesday night and Wednesday, and then Wednesday night the attending physician told my Mom and Youngest Brother (who were present) to summon the rest of the family because "decisions needed to be made." We all rushed to the hospital, and it seemed like we spent the next 12 hours or so talking with various CICU doctors and having DNR forms thrusted at us. (Dad had had a quintuple bypass in January 1997, and apparently such surgery only has a "guarantee" of about 10 years.) Anyway, the only forms we signed were "no chest compressions" in case of cardiac arrest, since all medical opinions agreed that it would probably fracture his ribs.
Much to everyone's surprise (especially the cardiologist), Dad managed to improve enough to be removed from the breathing tube and then eventually moved to a "regular" hospital room. A few days later he was well enough to be moved to the rehab floor, which is where he is now. However, his cardiologist says that his heart is functioning at about 15 percent, which I believe since Dad (who is still on oxygen) gets severely out of breath after a simple task like standing up and putting his pants on. And herein lies the rub; Dad constantly asks us when he is coming home, and if any of us is even five minutes late in arriving for visiting hours, he'll ask "Where were you? Why are you so late? I thought you'd abandoned me." He had been showing some early signs of dementia in the past year, but nothing too severe; for example, prior to this hospitalization he was able to go through his various pill bottles and place the appropriate meds in the "Monday-Friday" holder my Mom got for him. Since this incident, however, he's been a bit more forgetful of certain things and needs to be "coaxed" when his food tray arrives (i.e. put the soup closer to you, use your spoon not your fork, etc). But most of all he's become emotionally "needy," fretting when no family members are present (even though the hospital provides a "sitter"). The sitter informs us daily that Dad starts asking where we are beginning at 8AM (visiting hours start at 11) and despite her reassurances that we'll be there later he doesn't calm down until one of us actually arrives.
To make a very long story short, Dad's phalanx of doctors are of two opinions; a couple are telling us what we'll need to do when Dad comes home, while others are encouraging us to look at nursing homes. Dad's constant mantra whenever we visit is "when am I going home?" If we have to put him in an extended care facility, how do we explain it to him? How do we prevent him from trying to walk away? (During this hospital stay he's already removed his IV's and heart monitor twice and tried to get out of bed in an effort to go home, only to fall and injure himself.) IF we have to go this route are there any websites that "rate" such homes or give honest opinions from relatives who have loved ones there? My preliminary searches only reveal the Medicare ratings of such facilities, whereas I'd like to see comments from folks who actually have relatives in such establishments.
On the other hand, if Dad is deemed well enough to come home, my Youngest Brother is willing to be his caretaker (toilette-wise and everything else). YB moved back home a while ago in order to help care for my parents (buying groceries, mowing the lawn, driving them wherever, etc). He was laid off from his job (electrical engineer working in construction industry) last year and his unemployment benefits have run out. If Dad comes home and YB cares for him, he won't be able to actively search for employment. Are there any sort of grants/subsidies/Social Security benefits/something available for adult children who care full-time for an aging/ailing parent?
Thanks in advance to all who read through this disjointed story.
Dad was on the respirator in the CICU Tuesday night and Wednesday, and then Wednesday night the attending physician told my Mom and Youngest Brother (who were present) to summon the rest of the family because "decisions needed to be made." We all rushed to the hospital, and it seemed like we spent the next 12 hours or so talking with various CICU doctors and having DNR forms thrusted at us. (Dad had had a quintuple bypass in January 1997, and apparently such surgery only has a "guarantee" of about 10 years.) Anyway, the only forms we signed were "no chest compressions" in case of cardiac arrest, since all medical opinions agreed that it would probably fracture his ribs.
Much to everyone's surprise (especially the cardiologist), Dad managed to improve enough to be removed from the breathing tube and then eventually moved to a "regular" hospital room. A few days later he was well enough to be moved to the rehab floor, which is where he is now. However, his cardiologist says that his heart is functioning at about 15 percent, which I believe since Dad (who is still on oxygen) gets severely out of breath after a simple task like standing up and putting his pants on. And herein lies the rub; Dad constantly asks us when he is coming home, and if any of us is even five minutes late in arriving for visiting hours, he'll ask "Where were you? Why are you so late? I thought you'd abandoned me." He had been showing some early signs of dementia in the past year, but nothing too severe; for example, prior to this hospitalization he was able to go through his various pill bottles and place the appropriate meds in the "Monday-Friday" holder my Mom got for him. Since this incident, however, he's been a bit more forgetful of certain things and needs to be "coaxed" when his food tray arrives (i.e. put the soup closer to you, use your spoon not your fork, etc). But most of all he's become emotionally "needy," fretting when no family members are present (even though the hospital provides a "sitter"). The sitter informs us daily that Dad starts asking where we are beginning at 8AM (visiting hours start at 11) and despite her reassurances that we'll be there later he doesn't calm down until one of us actually arrives.
To make a very long story short, Dad's phalanx of doctors are of two opinions; a couple are telling us what we'll need to do when Dad comes home, while others are encouraging us to look at nursing homes. Dad's constant mantra whenever we visit is "when am I going home?" If we have to put him in an extended care facility, how do we explain it to him? How do we prevent him from trying to walk away? (During this hospital stay he's already removed his IV's and heart monitor twice and tried to get out of bed in an effort to go home, only to fall and injure himself.) IF we have to go this route are there any websites that "rate" such homes or give honest opinions from relatives who have loved ones there? My preliminary searches only reveal the Medicare ratings of such facilities, whereas I'd like to see comments from folks who actually have relatives in such establishments.
On the other hand, if Dad is deemed well enough to come home, my Youngest Brother is willing to be his caretaker (toilette-wise and everything else). YB moved back home a while ago in order to help care for my parents (buying groceries, mowing the lawn, driving them wherever, etc). He was laid off from his job (electrical engineer working in construction industry) last year and his unemployment benefits have run out. If Dad comes home and YB cares for him, he won't be able to actively search for employment. Are there any sort of grants/subsidies/Social Security benefits/something available for adult children who care full-time for an aging/ailing parent?
Thanks in advance to all who read through this disjointed story.
To explain it, if he has to go to a nursing home, you want to stress "temporary" and then you want to stay as involved as possible with the care given there. Ideally, an advocate should be with him as much as possible, and make no qualms about asking for what he needs.
I will refrain from telling you my opinion of nursing homes, lest Michigan's are a huge improvement over some of North Carolina's.
Don't know the financial implications, but would ask what kind of "home care" Medicare would cover, in case it gets to be too much for your Mom/brother, or to give them a respite. This can be enormously stressful.
Good luck with this. Enjoy the stories and the moments... Find the humor - bring up all the happy memories you remember and see if you can get him to remember and add to it... And, build a big web of family/friends to help all of you get through this chaos...
Sending your family warm thoughts...
posted by Leah at 2:02 PM on December 4, 2010
I will refrain from telling you my opinion of nursing homes, lest Michigan's are a huge improvement over some of North Carolina's.
Don't know the financial implications, but would ask what kind of "home care" Medicare would cover, in case it gets to be too much for your Mom/brother, or to give them a respite. This can be enormously stressful.
Good luck with this. Enjoy the stories and the moments... Find the humor - bring up all the happy memories you remember and see if you can get him to remember and add to it... And, build a big web of family/friends to help all of you get through this chaos...
Sending your family warm thoughts...
posted by Leah at 2:02 PM on December 4, 2010
In some states there are benefits for family caregivers, but not in many, and it's usually extremely limited.
posted by elpea at 2:03 PM on December 4, 2010
posted by elpea at 2:03 PM on December 4, 2010
Based on what you've said and what I experienced when my father was hospitalized, I suspect your dad may have a bit of 'hospital dementia'. From my experience, I would say he'll get more secure after adjusting to a long term facility -- no more pulling IV's and trying to walk off. My hunch is that the hospital induced dementia will ease if you take him home (although the regular dementia is progressive, and will be an issue in the future).
I didn't check many reports when I had to put my father in assisted living. I visited a place referred to me and noticed that it smelled good, all of the staff was smiling and friendly to each other and the residents, and the residents that were hanging out in the various activity rooms were happy & clean. It was a huge difference from the cardiac rehab he'd been in, and I deemed it fine. He lived there for 9 months and neither he nor I had any complaints (ok, the front desk lady was a bit snippy, but that was fixed).
posted by MeiraV at 2:07 PM on December 4, 2010
I didn't check many reports when I had to put my father in assisted living. I visited a place referred to me and noticed that it smelled good, all of the staff was smiling and friendly to each other and the residents, and the residents that were hanging out in the various activity rooms were happy & clean. It was a huge difference from the cardiac rehab he'd been in, and I deemed it fine. He lived there for 9 months and neither he nor I had any complaints (ok, the front desk lady was a bit snippy, but that was fixed).
posted by MeiraV at 2:07 PM on December 4, 2010
You might be jumping to conclusions about his cognitive ability. Sure, it could've gotten suddenly worse, but the stress and illness can be making it worse temporarily too (preview: basically what Meira is talking about). It's going to have to be a wait-and-see kind of thing.
It's hard for me to imagine why he would need to be placed in extended care following this episode. He's going to need close monitoring for a while, which will occur in the hospital; after that, he's not going to need the level of attention that would justify, say, a nursing home placement. It's hard for me to get a handle on his cognition-- and, like I said, probably hard for you, too, right now-- but he sounds with it enough that he should be involved in the discussion about what happens next, including discussions about extended care. It doesn't sound like he's much of a fan of the idea of nursing homes, and it'd be best to respect that.
I don't know a lot about family members getting reimbursement for care duties. I've heard of it happening, but not much. If your father has money left in the bank, you might consider reimbursing your brother with that. I don't think it would be a good idea for your brother to accept all caretaking duties. As you said, it would interfere with his job search, and he'd also get burned out. Can you accept some caretaking responsibility, if not an equal share? Can you compensate your brother for the difference?
Most hospitals have social workers on-staff. They specialize in placement of patients who need further care. You should try to set up an appointment with a social worker at the hospital where your dad is, and ask these questions of him or her.
posted by nathan v at 2:15 PM on December 4, 2010
It's hard for me to imagine why he would need to be placed in extended care following this episode. He's going to need close monitoring for a while, which will occur in the hospital; after that, he's not going to need the level of attention that would justify, say, a nursing home placement. It's hard for me to get a handle on his cognition-- and, like I said, probably hard for you, too, right now-- but he sounds with it enough that he should be involved in the discussion about what happens next, including discussions about extended care. It doesn't sound like he's much of a fan of the idea of nursing homes, and it'd be best to respect that.
I don't know a lot about family members getting reimbursement for care duties. I've heard of it happening, but not much. If your father has money left in the bank, you might consider reimbursing your brother with that. I don't think it would be a good idea for your brother to accept all caretaking duties. As you said, it would interfere with his job search, and he'd also get burned out. Can you accept some caretaking responsibility, if not an equal share? Can you compensate your brother for the difference?
Most hospitals have social workers on-staff. They specialize in placement of patients who need further care. You should try to set up an appointment with a social worker at the hospital where your dad is, and ask these questions of him or her.
posted by nathan v at 2:15 PM on December 4, 2010
It's very common for someone elderly who's experienced a heart attack and whose heart function is limited to have temporary cognitive deficits related to that. There are some heart medications that also have cognitive deficits as a side effect--has your dad's medication changed?
If your brother is comfortable with being your dad's caregiver, and if he can find other caregivers who are not your mom (presuming that she and your dad are living together, and that she is of similar age to your dad) to supplement his caregiving so that he can take breaks, do errands, etc., then I think it makes sense for him to go home.
Has anyone talked about hospice? That seems like a reasonable intervention for someone your dad's age with the level of health compromises he has going on.
Nobody can make you guys send your dad to a nursing home if that is not what you all want to do, unless the care plan you suggest is so unrealistic as to indicate that his life would be endangered by it. It doesn't sound like that's the case.
Talk about care planning with the hospital social worker and case manager. See if hospice is a possibility. Find out who is the local provider of, or access point to, elder services and open a case for your dad. If you guys can afford it financially, hiring a private geriatric care manager might be a good investment.
MeMail me if you want to talk about this stuff. My best to all of you.
posted by Sidhedevil at 2:18 PM on December 4, 2010
If your brother is comfortable with being your dad's caregiver, and if he can find other caregivers who are not your mom (presuming that she and your dad are living together, and that she is of similar age to your dad) to supplement his caregiving so that he can take breaks, do errands, etc., then I think it makes sense for him to go home.
Has anyone talked about hospice? That seems like a reasonable intervention for someone your dad's age with the level of health compromises he has going on.
Nobody can make you guys send your dad to a nursing home if that is not what you all want to do, unless the care plan you suggest is so unrealistic as to indicate that his life would be endangered by it. It doesn't sound like that's the case.
Talk about care planning with the hospital social worker and case manager. See if hospice is a possibility. Find out who is the local provider of, or access point to, elder services and open a case for your dad. If you guys can afford it financially, hiring a private geriatric care manager might be a good investment.
MeMail me if you want to talk about this stuff. My best to all of you.
posted by Sidhedevil at 2:18 PM on December 4, 2010
Response by poster: Thanks for responses thus far. Yes, we're in Michigan; metro Detroit area. Finances (as far as hospitalization and extended care for Dad) aren't really a problem, as Dad is one of the last survivng UAW members on his particular contract that had "gold card" health insurance benefits.
posted by Oriole Adams at 2:22 PM on December 4, 2010
posted by Oriole Adams at 2:22 PM on December 4, 2010
Response by poster: Further adendum: yes, Mom still lives with Dad; they've been married since 1958. She is 78 years old and is in excellent mental health but has periodic bouts of pancreatitis and has had a couple of stents inserted into her heart arteries over recent years. She's been taking care of Dad in terms of feeding him, washing his clothes, things like that, but on the other hand she's been getting a little cranky in recent years, asking Dad "Who is going to give you your pills if I'm not here?" which is why he started putting them into his weekly pill holder. Ever since they've been married she's always handled all the household bills and money, and laid out Dad's clothes to wear for that day, feeding him the things she knows that he likes, etc, so in a sense it's partially due to that coddling that he sometimes seems helpless when asked simple questions by his hospital therapist (but I'm not going to start berating Mom in person at this stage of the game).
posted by Oriole Adams at 2:30 PM on December 4, 2010
posted by Oriole Adams at 2:30 PM on December 4, 2010
IANAD, but I am a family member who has visited close relatives in a hospital after major incidents. The description of your dad's behavior sounds relatively normal to me - being in a hospital can be confusing and disorienting and many many caregivers report that family members with mild dementia or no dementia at all deteriorate while recuperating in a hospital.
In my opinion, a nursing home will in all probability enhance your father's disorientation vs. returning to a familiar location, but of course I can't make that decision for you.
I assume your father is already on Social Security? Does he also have a Medicaid/Medicare plan or some other insurance? Often times those will pay for in-home hospice care in lieu of a nursing home.
Wading through your options and what will be paid for can be very confusing and difficult. If your father is on Medicare here is a helpful website.
posted by muddgirl at 3:09 PM on December 4, 2010
In my opinion, a nursing home will in all probability enhance your father's disorientation vs. returning to a familiar location, but of course I can't make that decision for you.
I assume your father is already on Social Security? Does he also have a Medicaid/Medicare plan or some other insurance? Often times those will pay for in-home hospice care in lieu of a nursing home.
Wading through your options and what will be paid for can be very confusing and difficult. If your father is on Medicare here is a helpful website.
posted by muddgirl at 3:09 PM on December 4, 2010
Sorry, missed that he is on a UAW plan. Is there an insurance agent you can call to ask about what sort of in-home care they will pay for? I would be very surprised if some expenses like a part-time assistant weren't covered.
posted by muddgirl at 3:12 PM on December 4, 2010
posted by muddgirl at 3:12 PM on December 4, 2010
With all due respect to everyone, I would not be comfortable with a cardiologist who is surprised when patients don't die. I would ask for a second or third opinion on what can or can't be done to help your father.
And the hospital dementia and/or lack of oxygen explanation makes sense to me based on what I've seen from friends and family members in the hospital. (Not to mention caregivers who only know this addled version of the patient, and treat them like idiots.)
I agree with the rest of the posters who say that getting him to as normal of a life as possible, as soon as possible, is important.
posted by gjc at 3:26 PM on December 4, 2010
And the hospital dementia and/or lack of oxygen explanation makes sense to me based on what I've seen from friends and family members in the hospital. (Not to mention caregivers who only know this addled version of the patient, and treat them like idiots.)
I agree with the rest of the posters who say that getting him to as normal of a life as possible, as soon as possible, is important.
posted by gjc at 3:26 PM on December 4, 2010
Best answer: You are exactly where I was a couple of years ago....My Mom (age 85) was on life support, survived it (!) "came back" and then I was treated to constant mixed signals from all concerned about "what to do next". One doctor told me that it was very unlikely she would live, another told me that she could move across the country (with me) if she wanted to. It was so frustrating to me, because I (like you) wanted some clear answers and I wasn't getting them. My Mother also (like your Dad) became needy and even worse she could not hear or see very well and a lot of the staff at the hospital treated her like she was nuts (which she was not). I was shocked by how much the doctors pressed me to sign DNR papers...it hardly seemed like MY decision (and yet, since they were focused on her being "out-to-lunch", it fell to me.
In the end my Mother died in the hospital after she agreed to a surgery. Part of me still thinks that she "checked out" because she knew I was stressed out! She might have lasted another month or so, but it really seemed that she made a decision like: "Hell, I may as well just not wake up" and that's how it ended for me. (There was only me and her..not a lot of other family).
In your case it seems pretty clear that you are looking at what is called "Palliative care".
Even though my Mom was 85 I thought she could live until 90 or 100 for that matter. It is very weird to think about your parents going anywhere...but go they do. Steel yourself for the fact that this is very likely the end and if he goes into the home he may "check out". It will be ok and even normal and to be expected. It is hard to provide care at home...but ask the doctors what they think about what would be best.
It is a waiting game now. When you visit with your Dad get him to talk about where he lived when he was a kid..for in a sense he is going to be "going home" and these conversations will hearten him. Listen more than talk. His transition may be next week, it may be next month, it may be in 4 or 5 years (unlikely, but he may rally). If it were me I would try to keep him out of the home...but everyone must be realistic about whether or not they can provide care at home. Oh, one more thought...Nurses are good people to get the "truth" from. It was an older veteran nurse who told me that my Mother wouldn't rally. The doctors would not say! I think doctors are reticent to say how long a person likely has because they are afraid of being wrong or putting any ideas into the patient's head..but these medical types can look at the prognosis with pretty good accuracy. You just have to find someone willing to really tell you the truth. Good luck and hugs to you!
posted by naplesyellow at 3:29 PM on December 4, 2010 [3 favorites]
In the end my Mother died in the hospital after she agreed to a surgery. Part of me still thinks that she "checked out" because she knew I was stressed out! She might have lasted another month or so, but it really seemed that she made a decision like: "Hell, I may as well just not wake up" and that's how it ended for me. (There was only me and her..not a lot of other family).
In your case it seems pretty clear that you are looking at what is called "Palliative care".
Even though my Mom was 85 I thought she could live until 90 or 100 for that matter. It is very weird to think about your parents going anywhere...but go they do. Steel yourself for the fact that this is very likely the end and if he goes into the home he may "check out". It will be ok and even normal and to be expected. It is hard to provide care at home...but ask the doctors what they think about what would be best.
It is a waiting game now. When you visit with your Dad get him to talk about where he lived when he was a kid..for in a sense he is going to be "going home" and these conversations will hearten him. Listen more than talk. His transition may be next week, it may be next month, it may be in 4 or 5 years (unlikely, but he may rally). If it were me I would try to keep him out of the home...but everyone must be realistic about whether or not they can provide care at home. Oh, one more thought...Nurses are good people to get the "truth" from. It was an older veteran nurse who told me that my Mother wouldn't rally. The doctors would not say! I think doctors are reticent to say how long a person likely has because they are afraid of being wrong or putting any ideas into the patient's head..but these medical types can look at the prognosis with pretty good accuracy. You just have to find someone willing to really tell you the truth. Good luck and hugs to you!
posted by naplesyellow at 3:29 PM on December 4, 2010 [3 favorites]
Best answer: Take a look at the MI Choice waiver program, which helps people to get services in their homes that might otherwise only be available in a long-term care environment.
posted by shiny blue object at 3:36 PM on December 4, 2010
posted by shiny blue object at 3:36 PM on December 4, 2010
The last time my grandfather was in hospital they gave him a painkiller that interacted terribly with his existing meds. He pulled IVs, threw transfusion bags at nursing staff, ripped out his catheter and threw it at a doctor and ended up taking off walking down the highway with transfusion bag in one hand, stand in the other and arse wagging in the wind because he was still in a hospital gown. The last time I visited him we chatted about the best way to reinforce the table and how much my daughter eats. The meds SERIOUSLY fucked with his head. Doctors were talking brain injury until someone caught the meds issue. I would not make decisions based on his mental acuity in hospital.
That said, I'd be looking at palliative care as well.
Are you able to get him a calendar or alarm clock and have schedules written there? Or get him to write them? Time passes so slowly in hospital and I could see that affecting how he feels about visits. See if he can write it out as well, so it's familiar. Write letters to him as well, just talking and chatting.
posted by geek anachronism at 3:45 PM on December 4, 2010
That said, I'd be looking at palliative care as well.
Are you able to get him a calendar or alarm clock and have schedules written there? Or get him to write them? Time passes so slowly in hospital and I could see that affecting how he feels about visits. See if he can write it out as well, so it's familiar. Write letters to him as well, just talking and chatting.
posted by geek anachronism at 3:45 PM on December 4, 2010
That sounds like classical post-MI delirium, and to me it's verging on negligence to say that someone has significant dementia that soon after a major medical incident.
You can't say at this point that it isn't dementia - it could turn out in the long run that it is. But right now, after only three days off a ventilator, a sudden decline after major event, especially one that causes hypoxia? Treat it as a delirium!
The treatment section of the wiki is bang on about the first line treatment being treating the underlying condition and improving brain conditions, but it neglects the environmental things you can do. When he's fretting about when you're going to visit, is there a clock that he can see easily? Are the visiting times written down somewhere that he can read them? Is he wearing his glasses/hearing aid/false teeth or anything else that helps him interact with his environment? Is he seen by the same staff, or lots of different people? Is he on a noisy ward? All these things will be beneficial in both delirium and dementia, and getting him in a better state will help you involve him in decisions about post-hospital issues.
Preparing for the worst is a very sensible thing to do, since it could be dementia. But if it is a 'simple' delirium, people do recover - they can go from massively confused, even assaulting medical staff, back to their normal mental functioning pre-delirium. It worries me that your doctors aren't mentioning this when it's really very common.
posted by Coobeastie at 4:39 PM on December 4, 2010
You can't say at this point that it isn't dementia - it could turn out in the long run that it is. But right now, after only three days off a ventilator, a sudden decline after major event, especially one that causes hypoxia? Treat it as a delirium!
The treatment section of the wiki is bang on about the first line treatment being treating the underlying condition and improving brain conditions, but it neglects the environmental things you can do. When he's fretting about when you're going to visit, is there a clock that he can see easily? Are the visiting times written down somewhere that he can read them? Is he wearing his glasses/hearing aid/false teeth or anything else that helps him interact with his environment? Is he seen by the same staff, or lots of different people? Is he on a noisy ward? All these things will be beneficial in both delirium and dementia, and getting him in a better state will help you involve him in decisions about post-hospital issues.
Preparing for the worst is a very sensible thing to do, since it could be dementia. But if it is a 'simple' delirium, people do recover - they can go from massively confused, even assaulting medical staff, back to their normal mental functioning pre-delirium. It worries me that your doctors aren't mentioning this when it's really very common.
posted by Coobeastie at 4:39 PM on December 4, 2010
My sympathies to you. You are going through a very stressful time and it is very common to be very confused about your options. No one comes prepared for this because you have no experience with it. You will get a lot of conflicting suggestions and that is just the way it is because no one knows all the answers in these complex situations. Keep asking everyone -- doctors, nurses, social workers until you get something you are comfortable with and trust. Don't latch on to any one opinion you hear, either optimistic or pessimistic. You will hear both. Expect to be confused. It can take time to come to conclusions with the help of your family members. Don't rush into any decisions.
Definitely ask to speak to a palliative care doctor. They are specialists not in treating diseases but in relieving symptoms. If you father is feeling a lot of anxiety, the palliative doctor may prescribe treatment to alleviate that.
posted by JackFlash at 5:18 PM on December 4, 2010
Definitely ask to speak to a palliative care doctor. They are specialists not in treating diseases but in relieving symptoms. If you father is feeling a lot of anxiety, the palliative doctor may prescribe treatment to alleviate that.
posted by JackFlash at 5:18 PM on December 4, 2010
This is a tough decision. NPR had a story about home care and that under the ADA, Medicare must allow a person to receive care at home if that is what they want. Also, if your dad is a veteran, there is money availble to pay for caretakers for veterans (this money is also available to your mom if she ever needs it). I'm currently caring for my mom at home, but I have a full-time job and have caretakers in during the day. It is still stressful. Your brother should not try to do it alone.
Speaking from my own experience of being in a nursing home briefly after a serious car accident, I was certainly a great deal happier and felt I recovered more quickly once I got home. Care facilities have unfamiliar sounds and smells 24/7. You live on their schedule, not your own. It was upsetting to me and it seemed like forever between visits from family. The staff was perfectly nice, but very busy.
posted by agatha_magatha at 6:18 PM on December 4, 2010 [1 favorite]
Speaking from my own experience of being in a nursing home briefly after a serious car accident, I was certainly a great deal happier and felt I recovered more quickly once I got home. Care facilities have unfamiliar sounds and smells 24/7. You live on their schedule, not your own. It was upsetting to me and it seemed like forever between visits from family. The staff was perfectly nice, but very busy.
posted by agatha_magatha at 6:18 PM on December 4, 2010 [1 favorite]
Thanks for the update. You still haven't mentioned what your Mom's input is. As your Dad's spouse and, currently, one of his two home care providers, it seems like she should be heavily involved in the decision process. Since he has a support network (kid at home and wife at home, as well as other kid(s) who are there to help), I'd lean towards getting him home, with in-home care providers to supplement/spell the family members, for at least a trial period.
We have been dealing with ongoing issues with aging seniors in my family, and there are real anxieties about taking away freedom and autonomy. Unlike our elders, it sounds like your Mom is still doing ok, and is with it enough to make a smart decision. Please involve your Mom in the decision making process. Provide her all the information you can, participate in the decision-making process, and then support her in her choice for her spouse of 52 years.
posted by arnicae at 6:34 PM on December 4, 2010
We have been dealing with ongoing issues with aging seniors in my family, and there are real anxieties about taking away freedom and autonomy. Unlike our elders, it sounds like your Mom is still doing ok, and is with it enough to make a smart decision. Please involve your Mom in the decision making process. Provide her all the information you can, participate in the decision-making process, and then support her in her choice for her spouse of 52 years.
posted by arnicae at 6:34 PM on December 4, 2010
Well, if you have maybe decided that you do not want any more "
aggressive treatments" like intubation and such, he sounds like he'd qualify for home hospice care. Hospice won't pay long term placement but they will certainly send nurses and CNA's to the home for care as well as pay for all durable medical equipment and any medications relating to his diagnosis, comfort and bowel. I know "hospice" can be scary but it does not mean you are giving up nor that your dad is at death's door. If you do want any more info or are interested, let me know. I work in Vegas but I'm from Flint and can probably help you get a referral for an evaluation.
posted by yodelingisfun at 7:40 PM on December 4, 2010
aggressive treatments" like intubation and such, he sounds like he'd qualify for home hospice care. Hospice won't pay long term placement but they will certainly send nurses and CNA's to the home for care as well as pay for all durable medical equipment and any medications relating to his diagnosis, comfort and bowel. I know "hospice" can be scary but it does not mean you are giving up nor that your dad is at death's door. If you do want any more info or are interested, let me know. I work in Vegas but I'm from Flint and can probably help you get a referral for an evaluation.
posted by yodelingisfun at 7:40 PM on December 4, 2010
Medicare must allow a person to receive care at home if that is what they want.
This is not necessarily true. Someone has to sign off on a care plan upon the patient's discharge from the hospital--if an appropriate care plan cannot be agreed upon, the local or state adult protective services will be called in.
Obviously, this isn't going to be an issue with Oriole Adams's dad, because there's a strong family support network in place and I am sure they will be able to come up with an appropriate care plan.
As for the veteran's "aid and attendance" benefit (the best source of information is here), it takes at least six months and usually eight or more months for this to come through, even if there are no challenges to the application. Also, unless it's changed recently, I am pretty sure that spouses cannot receive the caregiver subsidy, though other family members may.
It's also means-tested, so it may be likely that Oriole Adams's dad wouldn't be eligible for much or any of a monthly benefit seeing as he has a UAW pension (unless there are other allowable expenses, like Mom Adams's ongoing health care, etc.)
If you do decide to apply for the veteran's benefit, let me encourage you get someone who is experienced in applying for it to help--ideally an attorney, but failing that maybe a local veteran's agent or someone from the UAW could help?
posted by Sidhedevil at 7:44 PM on December 4, 2010 [1 favorite]
This is not necessarily true. Someone has to sign off on a care plan upon the patient's discharge from the hospital--if an appropriate care plan cannot be agreed upon, the local or state adult protective services will be called in.
Obviously, this isn't going to be an issue with Oriole Adams's dad, because there's a strong family support network in place and I am sure they will be able to come up with an appropriate care plan.
As for the veteran's "aid and attendance" benefit (the best source of information is here), it takes at least six months and usually eight or more months for this to come through, even if there are no challenges to the application. Also, unless it's changed recently, I am pretty sure that spouses cannot receive the caregiver subsidy, though other family members may.
It's also means-tested, so it may be likely that Oriole Adams's dad wouldn't be eligible for much or any of a monthly benefit seeing as he has a UAW pension (unless there are other allowable expenses, like Mom Adams's ongoing health care, etc.)
If you do decide to apply for the veteran's benefit, let me encourage you get someone who is experienced in applying for it to help--ideally an attorney, but failing that maybe a local veteran's agent or someone from the UAW could help?
posted by Sidhedevil at 7:44 PM on December 4, 2010 [1 favorite]
You need to get a hospital social worker involved. They will be able to answer these questions in detail for you. This is what they do. Your family will (obviously) have to make the decisions but the social worker will be able to give you the information necessary to make the best decision.
A friend of mine was a Paramedic in the Detroit area for a number of years. If you would like unbiased recommendations on assisted living facilities and long term care facilities (note: they are NOT one in the same), I will be more than happy to see what I can find out. From what you're describing, an assisted living facility may be the way to go.
posted by cdg7707 at 8:13 PM on December 4, 2010
A friend of mine was a Paramedic in the Detroit area for a number of years. If you would like unbiased recommendations on assisted living facilities and long term care facilities (note: they are NOT one in the same), I will be more than happy to see what I can find out. From what you're describing, an assisted living facility may be the way to go.
posted by cdg7707 at 8:13 PM on December 4, 2010
Get your dad to the Mayo Clinic in Rochester, MN if he is given the "all clear" to handle the car trip. I take my 84 year old mother there every year (she's been going since the 1980's), and I can't tell you the number of extremely aged people I've met there over the years who were basically told to "go home and die" in their home towns because "nothing more could be done" for them. After only a short time at the Mayo Clinic, these people were given a new lease on life.
They're not miracle workers by any means, but I swear by the place. You will see license plates on cars from all over the country, Canada, and even other countries overseas where the cars have (presumably) been flown in. That place is the best in the world, by far, IMHO.
They saved my mother's life twice, and I believe my dad (who died in 1996) could very well be alive today had we not allowed him to become convinced that he could "do fine" without making the trip there each year.
That's a regret that my mother and I will have for the rest of our days. If we could do things over, we would have "kidnapped" him and driven him there.
Just my $0.02.
I wish you and your family, and especially your father, all the best.
posted by InsertNiftyNameHere at 2:11 AM on December 5, 2010
They're not miracle workers by any means, but I swear by the place. You will see license plates on cars from all over the country, Canada, and even other countries overseas where the cars have (presumably) been flown in. That place is the best in the world, by far, IMHO.
They saved my mother's life twice, and I believe my dad (who died in 1996) could very well be alive today had we not allowed him to become convinced that he could "do fine" without making the trip there each year.
That's a regret that my mother and I will have for the rest of our days. If we could do things over, we would have "kidnapped" him and driven him there.
Just my $0.02.
I wish you and your family, and especially your father, all the best.
posted by InsertNiftyNameHere at 2:11 AM on December 5, 2010
InsertNiftyNameHere, I'm glad you've had such good experiences, but this gentleman is not only elderly, he has pretty severe congestive heart failure with a heart functioning at 10-15%. Even a miracle worker can't make that go away, although he may have some time left with good medical management, and I do see patients coming from home with hearts functioning at that level. Unfortunately it is a progressive disease.
Oriole Adams, as others have noted, it is very common for people to have these problems in the hospital. You can read about it by looking up 'ICU delirium'. You've gotten some good advice regarding potential home care options with hospice and VNAs, but I wanted to make another point.
All patients like your dad have to have a physical therapy and occupational therapy (PT/OT) consult before going anywhere. The PT/OT service makes the recommendations about whether the patient needs rehab or is safe to go home. Having this evaluation done might make your decisionmaking process easier, because these people are trained to figure this kind of situation out. Also, every ICU I've worked in has a social worker/case manager who specializes in things like home care services and what's available for a specific patient. Talking to these parts of the team might help you sort out a plan. Patients who have hospital stays as long as your dad's typically are recommended for short term rehab.
posted by treehorn+bunny at 3:17 AM on December 5, 2010 [1 favorite]
Oriole Adams, as others have noted, it is very common for people to have these problems in the hospital. You can read about it by looking up 'ICU delirium'. You've gotten some good advice regarding potential home care options with hospice and VNAs, but I wanted to make another point.
All patients like your dad have to have a physical therapy and occupational therapy (PT/OT) consult before going anywhere. The PT/OT service makes the recommendations about whether the patient needs rehab or is safe to go home. Having this evaluation done might make your decisionmaking process easier, because these people are trained to figure this kind of situation out. Also, every ICU I've worked in has a social worker/case manager who specializes in things like home care services and what's available for a specific patient. Talking to these parts of the team might help you sort out a plan. Patients who have hospital stays as long as your dad's typically are recommended for short term rehab.
posted by treehorn+bunny at 3:17 AM on December 5, 2010 [1 favorite]
WE have had good experiences with Glacier Hills in Ann Arbor for assisted living - they also do shorter term rehab stays although from what you're describing doesn't sound like this will be a temporary situation. Glacier Hills partners closely with the University of Michigan's Turner Geriatric Clinic - if your folks are further southwest than where you are this might be a good option if you determine that he needs more care than can be provided at home. Talking to the ICU's social worker should help you find local care that is similarly connected to the hospital he's in - if you're in Birmingham I assume he's not at UM.
posted by leslies at 5:45 AM on December 5, 2010
posted by leslies at 5:45 AM on December 5, 2010
Response by poster: My thanks again to all of you. First of all, just hearing from others who've gone through a similar situation is reassuring. Sorry to not have responded sooner, but we're still doing the twice-daily visits to the hospital, because Dad notices if any one of us is missing and then will ask (for example, my one brother sometimes works two jobs on certain days) several times "Where did you say Karl was? Will he be here tomorrow, then?" and the commuting/visit time is taking serious chunks out of our day. And then when I say that out loud I feel horrible for griping. *sigh* Anyway, Dad was sort of like that for many years before he fell ill - if he was all alone watching TV and someone else was in the house, he'd find some way to ask them to come and sit with him (for example, back when I still lived at home I'd come home from work and went to my room to nap. A little later Dad nudged me awake - he rarely ventured into my room, much less touched me in my sleep - "The Simpsons are on, if you wanna see that.") He'd never say out loud that he was lonely or anything, and over the years we just knew that Dad didn't like to be left alone. But now that feeling seems to be amplified - he'll notice when Mr. Adams is absent (Mr. A has had to catch up on work for the both of us, and has opted out of a few visits to do so) even though there are four other family members present.
Dad is still on the rehab floor and our main concern is obviously his very low heart function. He gets very winded and pants heavily after just sitting up and putting on a shirt (part of his physical therapy). He is still using a bedpan and right now no one can say whether he'll get strong enough to use the toilet (with assistance, of course). That's probably Mom's main concern - she agrees with the rest of us that Dad would not be happy at any sort of home or hospice and would fare better (even if his days are numbered) better at home. But even though she's been married to him for over 50 years, the thought of getting up close to his personal hygiene requirements absolutely squicks her out. (Heck, even though she gave birth to me, she still won't eat off of my fork.) Even handling Dad's dentures makes her queasy, which is why Kurt, my youngest brother, has been handling all that kind of stuff. Kurt is willing to also do this at home, but Mom's worry is that Dad will think all is OK once he's home and then will get angry and frustrated when he can't do the things he used to before this happened, and be even more cantankerous. She seems to lose patience a bit quicker than the rest of us when Dad asks a question for the umpteenth time, but then again, she's the one who has been living with him 24/7 all these years.
In answer to other questions - Dad is not a veteran. He is currently in Henry Ford Macomb Hospital, formerly Bi-County Hospital, and for the most part we've been very pleased with the staff and facilities. (Only had one bad nurse experience, other than that everyone has been most attentive and efficient. But therein lies an uncomfortable "rub" - even though Dad gets friendly with the various "sitters" assigned him, he still apparently feels alone and neglected until family members are present.)
posted by Oriole Adams at 11:42 AM on December 6, 2010
Dad is still on the rehab floor and our main concern is obviously his very low heart function. He gets very winded and pants heavily after just sitting up and putting on a shirt (part of his physical therapy). He is still using a bedpan and right now no one can say whether he'll get strong enough to use the toilet (with assistance, of course). That's probably Mom's main concern - she agrees with the rest of us that Dad would not be happy at any sort of home or hospice and would fare better (even if his days are numbered) better at home. But even though she's been married to him for over 50 years, the thought of getting up close to his personal hygiene requirements absolutely squicks her out. (Heck, even though she gave birth to me, she still won't eat off of my fork.) Even handling Dad's dentures makes her queasy, which is why Kurt, my youngest brother, has been handling all that kind of stuff. Kurt is willing to also do this at home, but Mom's worry is that Dad will think all is OK once he's home and then will get angry and frustrated when he can't do the things he used to before this happened, and be even more cantankerous. She seems to lose patience a bit quicker than the rest of us when Dad asks a question for the umpteenth time, but then again, she's the one who has been living with him 24/7 all these years.
In answer to other questions - Dad is not a veteran. He is currently in Henry Ford Macomb Hospital, formerly Bi-County Hospital, and for the most part we've been very pleased with the staff and facilities. (Only had one bad nurse experience, other than that everyone has been most attentive and efficient. But therein lies an uncomfortable "rub" - even though Dad gets friendly with the various "sitters" assigned him, he still apparently feels alone and neglected until family members are present.)
posted by Oriole Adams at 11:42 AM on December 6, 2010
Just to add, hospice is not necessarily going away, it's actually most often done at home with home visits.
posted by yodelingisfun at 4:33 PM on December 6, 2010
posted by yodelingisfun at 4:33 PM on December 6, 2010
Response by poster: Update: Dad came home just before Christmas. We bought a bedside commode and a transport chair for him, but he's been getting around (from bedroom to bathroom, and from bedroom to living room chair) fairly OK with a walker so far. He gets very out of breath still, but that's to be expected as according to his doctor he only has about 15% heart function. He's on oxygen part of the day. Surprisingly, just being home seemed to improve his outlook/mood 100% and he's now eating more regular foods (instead of existing on soup, bananas and Ensure), sitting up in his favorite chair for four to five hours at a time and (hooray!) taking himself to the bathroom. He's less foggy mentally as well, even solving some of the puzzles on Wheel of Fortune before the rest of us. My brother is still doing a lot of Dad's personal care - shaving him, removing/cleaning his dentures, things like that - but overall Dad is much more functional than the doctors predicted. It's no cakewalk but at least we've bought some time to examine the assisted living option more thoroughly should it become necessary. Thanks again to all of you for your advice and support.
posted by Oriole Adams at 1:12 AM on January 5, 2011 [1 favorite]
posted by Oriole Adams at 1:12 AM on January 5, 2011 [1 favorite]
This thread is closed to new comments.
Before the hospitalization, were your mother and father both living together at home with your younger brother? You don't mention what your Mom thinks about all this (if the 'Mom' you refer to is your father's spouse/partner), and that seems like a very important part of the decision.
Another very big consideration is finances. You mention being interested in financial aid for your brother, but not how your parents' or other siblings finances are. This has a big impact on which facilities (or home health services) you can afford.
Please tell us a little more so we can try to help, and best wishes.
posted by arnicae at 1:46 PM on December 4, 2010 [1 favorite]