I just talked to a hospice facility to get info about services and no way we can do this for my Dad at home! Any advice?
My Dad is at Palliative care level I've come realize. No way we can do hospice. A caregiver is required 24/7. Family is responsible for caregiving at home. Like turning my Dad if he gets bedridden. Diaper changing in bed. Giving my Father by mouth, sublingual meds. Never call 911. Even if he falls and is screaming in pain. I call hospice and they assess. Well who is picking up Dad (230lbs rt now) from floor if he falls from meds reaction? I can't. Im 5'3 and 122lbs. Mom def can't.
At end it will need a 24/7 caregiver. I would have to move in with parents on a couch. I have a back prob and hip prob. Pain. I have a husband and 2 sons at home also. I just didn't realize, I guess how much care it will be if he stays at home. Dad hates nursing homes. Then towards end will be on strict schedule of meds every 4 hrs then prob 2 hrs so I will need to be there 24/7. They don't have enough money to hire a caregiver at this point. Hospice only provides equipment and bath aides and meds. The rest is up to family.
They may not be there when Dad passes or is near death. I'm not saying it beneath me to care for him. I physically can't. I just don't know what to do now. He is sorta Palliative care but it's new in my town and only one agency does it. No bath aides. No team. Just Dr an N.P. we do all caregiving on Palliative. I already load pills. Appts. Groceries. Rx's pickup. Keep up with health info and appts. Spend night occasionally to give Mom a break and sleep all night. Dad is able to change depends. But it's his symptoms that are out of control. Pain not controlled at this point. Non-compliant. We have gave up arguing with him about don't drink this or eat that. Congestive heart failure is main issue with diabetes. And pain issues and sleep disorder now taking over where he is in bed most of time but has periods of being normal acting. And talking like he use to. No dementia. He just doesn't want to comply with Dr orders to keep " symptoms" of non-compliance at bay. But after todays visit with Hospice, Dad not there totally and if he has no caregiver to handle his 230 lbs body on chging depends. Helping to bathroom as he becomes weaker. He could fall. Who would pick him up? And I'd call hospice not 911. And he is laying there screaming in pain? I don't even know what to do.
They are getting low in acct and if no hospice and we leave him alone and let him do whatever, there will be a 911 call and ambulance to hospital. Keep 3 midnights then wear? Does Medicare pay for only 20 days in rehab (he is not a rehab candidate) or will they pay anything for going straight to Nursing home side? And I have to make sure NH accepts Medicaid. And then what to do with Mom. She could live alone and takes care of herself pretty well or live with me (very cramped. Would have to sleep with me an not much of her stuff would even fit in our bedroom) or live in another city 1 hr an 20 min away with my sister. They have a extra bedroom actually 2. How to separate their money so Mom not destitute? She gets 900$ SS. Dad gets more 1200$ mnth. I dont want all money (35,000$ left) going to his NH bill an she is screwed. I just dont know what to do. I will be going over Sept 5th every day 3x a day to give insulin shots. Caregiver we hired has to go now. Too much. 1500$ a month. And thats only 9-1pm M-F. She is doing laundry. Cleaning. Trash. Chging beds. Dad bath on Mon an Mom too. Mom bath on Wed an Fri. Then Fri we pay a bath aid who loves my Dad 15$ a bath to bathe him. So will lose all that as of Aug 31st! Except that Fri bath for Dad. I cannot bathe him. He is too big and heavy and I have back pain and bad hip. My sister should come every other weekend I hope. I spoke to Hospice because Dad has declined in last 3 months. Won'tget up for shots. So worried about low blood sugar if he doesn't go eat after shot. Sometimes not taking meds cause won't get up. Sleep deprivation is another prob. He feeds himself. And walks around but can't let go of walker or will fall. He just fell, 30th. Over water! I don't know.
6 Answers
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Totally agree with refuse, refuse, refuse. Not safe for any of you to have him back home. There is no way you can easily, safely, sanely care for him at this point in time. Getting old is the pits!
I understand that you are physically unable to do this care; that is very clear. Nor do I think that you should try. You sound very close to breaking and I am so worried for you.
As to Rehab I think it is unlikely he would be accepted for it if he is physically unable to do physical therapy, and etc. Who has suggested hospice to you? Was it his MD? Is there now the expectation that Dad has 6 months more? Hospice can be done "in facility" and quite honestly, with the physical needs, the problems with the weight, I don't see any possible answer at the moment other than this placement. I understand that it isn't what your Dad wants. But I don't see another choice; we sometimes just are not left with choices. This is no one's choice. This is just what must be now.
I want you to think of one thing for me, OK? Just take in a deep breath and think about the 1,000s of people who are in just such dire circumstances as your Dad right now, and imagine that fully one half of them have no support. NO family whatsoever. So that then there is no question whatsoever as to what must be done. The person must enter a facility that can care for him or her. What if you were not here? Worse, what if you put your back permanently out and YOU were in a bed; it would be so clear then that you could do nothing. And who would care for you?
Sooner or later, and I suspect sooner, sadly, Dad will fall again, or fail in a way that requires his hospitalization. At that time please tell the Social Worker on his admission that you cannot take him home, if indeed he is currently in your home, or you in his. That you PHYSICALLY and MENTALLY cannot. Don't buy the platitudes of "We can make this work" because it sounds like you have already been fed that and you know that they can't and won't make it work.
You sound utterly distraught. I am so very sorry.
You are under no obligation to destroy your life, your family and your health for your parents. I know that sounds cold and hard-hearted, but you will do them no good if you are dead or even more disabled than you already are.
Have you talked to the local Area Agency on Aging? To a Social Worker with a good Hospice organization? To a qualified Elder Care attorney?
Your parents' lack of planning for their old age does NOT have to fall entirely on your shoulders. Please read what someone else wrote below about the limits of our responsibility:
I found this very wise post on another (financial) website; I think it is good cautionary advice.
The OP wrote in that her mom, 58, had recently suffered a stroke, was refusing PT for balance issues and was probably not going to be able to return to work. The mom has no savings and still has a mortgage. She is resisting all offers of help from her adult child.
"...When in similiar circumstances, the toughest thing for us was to think about the problem dispassionately: to acknowledge that the limit of your responsibility is to connect your mom with services and to be supportive of your mom’s decisions —good or bad; to decide firmly that Under no circumstances should you consider doing anything that will negatively effect the finances or structure of your marital family unit.
There are natural consequences to your mom’s past and present actions/decisions. You can NOT want things for your mom any more than your mom does. If she chooses to ignore advice, pass on services, avoid decisions, etc then that is her decision as an adult and she alone will live with the consequences. It’s possible that by getting a social worker from Area Aging Agency involved that your mom may find her way to counseling that may start to chip away at the underlying mental issues.
You dad may express that he wants no part of a residential living/care situation but his actions seem to be saying he has given up and doesn't really care. In fact he may be saying in his own way that he just wants to pass sooner rather than later even if he can't admit that out loud. Not only isn't he participating in his care he is working to prevent it sometimes by the sounds of it. If he is a type 1 diabetic, insulin dependent 3x a day he has likely been living with diabetes and managing his food intake/insulin for a long time so this isn't new to him, you say he doesn't have dementia so he is aware of what he is doing, even though we may not understand it he is choosing "failure to thrive" if my understanding is correct. I'm not saying he doesn't have reason to to make this choice, his health is failing and he is probably hating every minute of having you. your mom and sister care for him, the prospect of having you (or anyone) change him in bed or pick him up off the floor is likely no easier for him than it is for you. His way of dealing with it is just very different and yes more difficult for all of you, than you choose. The thing here is while he can make choices for himself, including not taking his medicine and either having a major debilitating medical event or dying, he can not make choices for you, mom or sister, you each get to make those choices for yourselves. Now I am not suggesting this is in anyway easy or isn't messy because there is emotion and years of training involved, he's your dad, he's mom's husband but I am suggesting you try to separate that out as much as possible. Tell dad what you can and can't do, make your suggestion and then let him make his choices.
It is not sustainable for him to stay at home under the current conditions, none of you are able to manage the things his caregivers have been and he can no longer afford to have the caregivers in. You can not come 3x a day to administer his insulin not only is that impracticable it simply isn't possible. Your sister, though she should speak for herself can't drive the 1.5 hrs each day to do it either. If he falls emergency services are going to have to be called to pick him up and that's going to present a problem quick because you aren't physically capable of doing it, it simply isn't safe for you or mom of course. This is another good thing to focus on when trying to reason with dad maybe, Mom and her needs, how to protect and care for mom now and in the future.
Looking at the various options doesn't commit him but it does give him/them more control over what might happen than waiting until a hospital stay dictates for him. Getting an evaluation for what kind of help "they" really need might be helpful and if you have the right agency put you in contact with someone who can give you the various options to accomplish that. If he doesn't want to be proactive and prefers to wait until he has glucose emergency or break from a fall or some other medical emergency that takes him to the hospital that's his choice but you will not take on responsibility necessary to get him released home or lie about the assistance he has. You will do everything you can to help he and mom get any assistance needed, do research, see professionals for help, get their legal affairs in order so they don't loose things they don't have too.
It might take several conversations, don't angrily lay down the law and maybe there should be one or more with Mom, Sis, Dad & you, give him every indication you all want to be a team but he has 2 choose 2 B part of it
You need to spend the money to have an elder law attorney help with Medicaid, mom will not be left with nothing, but you have to do it right. Since it is state run and varies state to state it is really important that you get legal assistance to ensure that mom retains as much money as possible, this includes part of his social security and their savings.
www.nelf.org can help you find a certified elder law attorney in your area, they specialize so they are not always as expensive as other lawyers. Meet with everyone on the list, have written questions and take notes, update questions from the information that you receive and then hire the attorney that feels like the proper fit, you will know. You are interviewing them for a job, if they don't offer free consultation, don't bother with them.
I would start scheduling appointments today, it could take some time to get in and it takes time for Medicaid. I would go online and see what documents you will be required to submit and start compiling them now and add each month as it comes in. Never send the originals, unless required, send or keep copies of everything.
Best of luck.