Sending a prayer and hugs for you rockvillemom, also taking a deep cleansing breath for you.
I’m so sorry rockvillemom…I also have parent that haven’t spoken to me from time to time, and then use illnesses, etc. as a way to reconnect.
My parents were here last week and it was a draining one in so many way. They are all over the place, I think they are trying to plan too many things at once and Dad is a control freak. So, they go back Friday, i call Monday and he’s not breathing well. After almost yelling at him, they called 911 and now he’s in the hospital with oxygen and has pneumonia. He has terminal lung cancer and cancer in his kidneys. We don’t how long he has…they just said less than a year…could be 2 months, 6 months, 8 months, etc.
So, they are scraping their plans to go to S.A. for a month. There is a friend with them this week as Mom doesn’t drive. She’s going back home and I’m flying down on Friday to stay a week. I’m going to try to talk them into coming back home right away as soon as he gets out of the hospital, because they have NO ONE down there to help. No one. They do have a person who will drive them sometimes, but he’s 70 and works. Plus, mom doesn’t like to stay alone. If I can’t reason with them, the only thing I can think of doing is to try to find some home health care people.
so, what do I do when I’m in Florida next week? Should I call today to some hospice center and tell them what’s going on? Then, are there organizations who will drive you around, or help you get grocery’s, take you to the hospital? I’m trying to tell them this is all expensice and is going to keep happening and we can’t keep flying down there. Any suggestions as to steps I can take right now before I get there. I’m just SO LOST!!!
@conmama I would start with the assigned hospital social worker - she can provide you with resource information. Then I would start calling the area hospice agencies (starting with the one or ones social worker recommends). That can provide you with the information so that when you are in FL, you can make the best use of your time. Also based on what services in FL, can see about getting same services in your geographic area.
With father debilitated, hopefully your mom will be more agreeable to your plan.
Thanks @SOSConcern . I would like to do this quietly without my parents knowing at first. I’m hoping to make them see reason…but then if I don’t, then I have people to call. D you think it’s possible to just call the hospital and ask for the Hospital Social Worker? Do you think they will just talk to me?
Yes they will I believe - however with the HIPPA regulations she/he may have to get your dad’s written permission if not given on admission. Tell the social worker you are coming down in a week, so it is important for you to be able to do some phone work before you come. She/he may get dad’s permission quickly when they realize you can help them achieve their objective (move out of hospital to a good situation ASA medically P).
The social worker can explain the local hospice guidelines. See if they’ll give respite care, by a volunteer. It can be misc support, from chat to an errand. But it depends. You can also check online for their area.
Oh, conmama. Sorry for what is going on with your parents. Agree to be in touch with your father’s assigned discharge coordinator (typically a nurse or social worker).Most frail elders (with some expectation of improvement) go from at least a 3 day Medicare qualifying hospital stay to a skilled nursing rehab facility that is covered for 21 days by Medicare and up to 100 days with many Medi-gap policies. Let discharge planner know that they have zero supports locally, mother doesn’t drive, etc. and that you would like to aim for the best outcome: that they move near you when feasible. It is quite tempting to make that move directly from the hospital or rehab facility IF your father is medically cleared to to do so. Yes, it is chaos in the moment, but things can be cleaned up behind them once they are well situated. Perhaps research places near you for the appropriate level of care and see what discharge coordinator would propose if they had a short time there prior to transition.
I lost a parent to lung cancer, so am sharing my thoughts, recognizing that every situation is different. Pneumonia is challenging for any elder, and likely much harder on one who is an underlying lung condition. From where I sit, especially given the chaos you are describing, having scheduled home care with no family nearby sounds like a way to become an involuntary member of the “crisis du jour club”. It is very hard to establish the consistency of routine and professional eyes on the illness under these conditions, so using what you know about their coping capabilities and likely disease progression will steer you well. I would be concerned that if medical clearance for a move near you exists "now’ (not literally as he is acutely ill), that over time, that option could be off the table due to health challenges. Could be helpful to your mother to be settled in an appropriate situation as her husband’s illness unfolds.
My parents had moved from 3 hours away to 20 minutes away in a comprehensive elder facility the month before the lung cancer was diagnosed. Although that was 11 years ago now, every time I think about it I am grateful for how that played out. It takes a village. My other parent is now 90, has dementia and resides there in a skilled nursing facility memory care unit. I honestly don’t know how it would have been manageable over all these years with the support and proximity. I know that circumstances don’t always cooperate with optimal goals, yet sometimes starting there and working one’s way to the possible helps.
All the best. This is the tough stuff.
Father is so much nicer when he is flying on pain meds. Almost pleasant!
@conmama - I feel your pain!
OK…thanks you all so much! Just got off the phone with the friend who is there and leaving when I get there. She said that it looks like they will be letting him go from the hospital tomorrow, most likely with oxygen. He still sounded like he was having problems breathing when I was there. She said my parents seem to be on board with coming home. I’m hoping that is immediately…meaning, next week we spend packing their suitcases and they can fly home with me when I leave. Maybe we should plan on doing is even sooner if we can, I just don’t know.
Thanks SOSConcern for letting me know about he doctor having to sign some release for me to have information. Hospice came in to talk with my parents today at the hospital and told them they will be coming to their condo, probably will need 5-6 hours right now. I guess there is a case manager and the “friend” is going to give her my number to call me so we can discuss everything. I will ask her if my father can sign a release before he leaves so that I am given permission to know about their medical care. Actually, I’m going to text the friend to see if she can find out today.
Travelnut…Thank you for your advice. Since this is all new to me and we are getting slammed with it, I’m trying to figure out what to do . I did call Hospice down the road from me and they said they need the doctor’s orders, so I will find out if we can do that next week…have them call them to get Dad set up. Right now they will have to come to my house and then maybe my brothers, who knows where they want to go. I know they are thinking an apartment, but they keep turning their noses up to assisted living facilites…Mom barking constantly at me she is NOT going into a nursing home. There are some independent living places close by and I’m going to check them out anyway.
I agree with that I’d rather have that mass chaos right now, but have them home. We can deal with going down and having Atlas pack up their stuff later. They have the money to keep paying their condo rent right now, so that’s not an issue.
WE have told them and told them for 5 years now they need to move home. I just so with they had listened.
@conmama, I join your CC friends here wishing you the very best handing the current situation. I hope this isn’t too upsetting to mention this, but my brother (age 59), who had had a liver transplant five years ago followed by various surgeries due to metasteses in his lungs from his original liver cancer, plus awful complications from the many meds he was taking, passed away last month when he was hospitalized with pneumonia. He fought very hard and lived a pretty good life for several years following the transplant but once he lost his mobility due to brittle bones, he couldn’t fight so much any more and perhaps the pneumonia was a blessing in the sense that the disease has traditionally been called the “old man’s friend.” He was hoping for another few months of life to see his daughter get married in October followed by his 60th birthday the following week, but it was not to be.
It’s good that you will be going there next week.
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Best of luck, conmama and RVM. Agree that trying to get these plans in place before discharge is the best, as they are not supposed to discharge a patient without clear, safe and appropriate aftercare plans.
@oldmom4896 …one of the things that I love about this board is that nobody sugar coats anything. I hate that, so please know that I appreicate greatly you telling me about your brother. I think being aware of things helps me cope and prepare in case the worst happen. I had never heard that expression about pneumonia.
I wouldn’t be surprised if that happens, I would think that lung cancer and pneumonia would go hand in hand.
I’m feeling very overwhelmed right now. I know you all did, too. I can’t thank you enough for all of your support. Please pray that they come home with me.
@conmama, thinking of you. Even if your mom barks, you are wise to go ahead and check out assisted living for her. The better senior living communities often have waiting lists, and if she decides after she is widowed that she is lonely and wants to move (or if her health takes a turn for the worse), it may take a while to find a vacancy at the right place. My MIL said for years that she wanted to stay at home, turning away Meals on Wheels, cleaning services, etc., but when she decided she had had enough, she wanted to move IMMEDIATELY. Easier said than done.
In addition to the social worker, a geriatric care manager can be very helpful, especially if you live far away from parents.
@conmama
I don’t know if my wording will come across as gentle,but please understand that it is my intent to sound gentle.
You can’t make your parents do anything. You can only decide what you are going to do. I understand that you want them to move close to you so that you can be involved in their care. If they insist that they are not moving near you, then you need to accept that. Just clearly state to them what you can and can’t do. So, if they remain where they are, you’ll need to tell them that you can not be flying down every week (or every month) to help with the latest crisis. Let your mom clearly know that she will be on her own to manage transportation for herself (maybe help her find a list of taxi services she can call).
If they do agree to move near you, again you need to be very clear on what you can and can’t offer them in terms of help. Be clear on your boundaries (and this is so important!). They can not think clearly at this time of crisis, so they will make unreasonable requests/demands. So think about this in advance and do not feell guilty when you need to say no. Boundaries will keep you sane in all of this. You’ll need to save some energy for when your mother is widowed as she may lean heavily on you at that time.
Best wishes.
conmama and rockvillemom, I will keep you in my thoughts.
Sometimes everything hits at once. Parents on painkillers can be an adult child’s best scenario.
My mom got advance notice of discharge from rehab on Friday afternoon. Last day for Medicare to pay should be today, but I filed an appeal at official notice on Monday. She is nowhere near ready to leave, but the therapists say that she has plateaued. There isn’t anything from them WRT the probability that she will get better, although we daughters think that will be the case. One of the problems we have is that the rehab was for the compression fracture and she’s since had other things happen that affected her thought processes, digestive system, and so on. She’s had heart monitors, EKG, EEG, CT, MRI, sleep study, evil roommates that set her back. Since they aren’t related to the fracture, they can’t be considered. We don’t have any answers on what caused the mental issues; the docs are stymied.
Mom isn’t eligible for assisted living at this point, so it is a probable move into long term care with an aide assigned who will help her with movement, balance, etc. so she doesn’t regress. All private pay, of course.
We had the care conference yesterday. At the end we all stood up and mom did as well. Uh oh. Her wheels were unlocked and she took a tumble. Some bruising on her back and a sore shoulder, but nothing critical.
I’m at the breaking point. My husband sees it and says I need to take it easy. Unfortunately, work and mom stuff really aren’t allowing it. (Cases in point: I cancelled my upcoming vacation in order to get a required plan done, I spent half of last Friday-Sunday with mom, spent 4 hours each Monday & yesterday.) At some point she will have to have time on her own, but we all feel guilty if she’s sitting miserable, in tears, in a nursing home. It has to get better.
Mom got a new roomie on Monday. 89-ish, broken hip and wrist, undergoing chemo for cancer, also had some form of cancer a year ago. I cannot imagine.
When my Dad was diagnosed with terminal cancer, my mother immediately wanted to move to our area, my Dad would not. About 18 months later he needed surgery and she made it happen when he was weak and could not fight. A few months later he told her he was very glad to be near us, they were about 1 mile from me for those final years in a condo. They did not need true assisted living. Once Dad died, it became obvious that my mother needed to live with us. It’s been fine, not fantastic, but fine. We have all always gotten along and even at that, it is still a stress having another adult in the home 24/7
My in laws would never be welcome so we have never told them about my Mom moving in!
Bookreader is correct, BOUNDARIES, the ones that allow you to remain married & sane are critical
You all give me do much to think about, thank you so much. I know I need boundaries, that is hard for me. My parents are masters of guilt. They are also the kind of people who don’t mind if family stays with them, even people not family, for extended periods of time, I have absolutely know idea why and how they have always done that. Mom has never worked, so was always home alone and enjoyed the company and well…she’s a doormat and I think enjoyed having someone between her and my Dads bad moods. They just don’t understand why I’m annoyed after 4 days. We have had fights in the past about them wanting to stay here 3 week or so. I said no, she called my husband a bad name …just to me…and we hardly spoke for a year. Got to get dinner on, be back later.
I can’t thank you enough for sharing your stories, it makes me feel not so alone.
Another thing - if the hospital is a public one, they will have all the forms for health directive etc. Will want to do those in FL, and then if they move to your state, get your bases covered there. If you have the signed paperwork, it makes potential situations to work better because you have authorization and health directive.
Thanks, @bookreader. Maybe that should be the subtitle to this thread. (Also applies to our other “jobs” of getting kids into and through college).
DH and his sibs are getting very tired of having social workers shake their heads at the way FIL chooses to live. Until he is far enough gone that we are dead sure he can be declared incompetent and someone can be named guardian, he gets to make the decisions, even if he makes terrible ones. Not sure if the recent involvement of a state social worker will change anything there.
On a happier note, my mom decided to go ahead with surgery on her hand to restore function to all of her fingers that had been lost with some tendon damage. She was home and able to wiggle all fingers the same day. Some discomfort and inconvenience from the splint, but otherwise ok. I am second (of 4) in the rotation to go stay with her, and will be there tomorrow. We are betting on how long before she kicks us all out.