End Of Life Decisions

Filed in Delaware by on March 7, 2014

One of the things I value about Delaware Liberal is our community.  This isn’t the first time I’ve reached out, and I doubt it will be the last.  As I type this I am awaiting a call back from my father-in-law’s senior living apartment’s service coordinator.  It’s decision time, which means I’m scrambling for information.

My father-in-law took a fall about a month ago.  He seemed okay, and we were fortunate he was given a visiting nurse.  I LOVE Medicare!  Then yesterday, my phone rang.  It was the EMTs calling.  My FIL had fallen and was completely disoriented.  He was refusing treatment and the EMT called me before they had to call the police – because my FIL HAD to go to the hospital.  Of course, he did.  I spoke to my FIL on the phone – Luckily, he recognized me – but he still refused to go to the hospital.  I told him I was on my way over, then called my husband.  By the time we got there the EMTs had finally gotten him on the stretcher.  He’s now at the hospital and we’re awaiting test results.  Those that have come back have indicated he has shingles, a UTI, occasional cardiac atrial fibrillation and has suffered a series of mini strokes.  The hospital expects to keep him for three days.

So, here’s where I’m at, and where I turn to DL for advice.  I’m thinking his days at the senior apartment (which was amazing, btw) are over and we need to find assisted living.  Needless to say, he doesn’t have any money, and while we aren’t struggling financially we do have a child in college and a high school junior.  Paying thousands of dollars for assisted living isn’t possible for us.  You know, whenever I hear people spouting platitudes about how money doesn’t buy happiness I roll my eyes, because, while it may not buy happiness it does make a situation like this 1,000x easier.

So, my first question is: Does anyone have any insight or recommendations for affordable assisted living?

Second… my husband has to be one of the few people on this earth who hasn’t had chicken pox.  He’s been banned from visiting his father.  Guess who now has that job!  My husband feels terrible about this.  I mention this because my FIL had major “accidents” when he fell and there’s an almighty mess to be cleaned up – and my husband can’t do it.  So… in addition to finding an assisted living facility I’m trying to find a cleaning outfit that will clean up what is deemed hazardous waste.  If I can’t find someone, I’ll do it… BUT I’D REALLY LIKE TO FIND SOMEONE!  Help!

Oh, did I mention that my husband has three other siblings?  Two of which live locally, but seem unable to help (unless given a specific job – that my husband must assign – and which would come with a gazillion emails, which ends up having my husband say it’s easier to just do it himself) and haven’t even shown up at the hospital?   Yeah, I’m a little bitter.  I just feel so awful for my husband.  Okay, end of venting about something I can’t change.  Thanks for listening!

I already know this community will answer my call – even if it’s just with words of encouragement.  And for that… I thank you.

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A stay-at-home mom with an obsession for National politics.

Comments (30)

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  1. Ciro Poppiti says:

    You are not alone. Give me a ring over the weekend and we can talk about some options / resources / attorney referrals.

    Ciro Poppiti
    302 521 5461

  2. AQC says:

    I’ve been struggling with similar issues with my mother over the past several months. I would also love to hear people’s advice on this.

  3. pandora says:

    Thank you for the references and offers of help! I’m on my way to the hospital shortly – gotta speak with the discharge planner/social worker (hadn’t even known they existed!). The service provider at my FIL’s senior apartment was very helpful and it looks like his next step is a rehab facility.

    Thank you for your offer, Mr. Poppiti. I will call this weekend.

  4. pandora says:

    AQC, feel free to email me at pandora@delawareliberal.net and we can chat about what I’ve learned so far… and commiserate.

  5. Delaware Dem says:

    If you’re father-in-law is on Medicare already, doesn’t it pay for the rehab facility?

  6. Delaware Dem says:

    As for cleaning up the apartment, call one of those maid services to do it.


  7. Tom McKenney says:

    There is a lot to answer in your post. First a UTI can cause confusion and other symptoms.My mother is in the Lorelton and we are very happy. My wife who inspected nursing homes said if she had her choice she would go to the Little Sisters of the Poor Jeanne Jurgain (sp?) I would seriously recommend shingles vaccination to anyone over 50

  8. ben says:

    Pandora. If you’re talking about hazardous biological waste, anti-microbial Bio-guard hospital scrubs (find some long sleeves) and nitrile (no one should be using latex) gloves (tuck the selves under the glove) will keep most infectious waste off of your skin. You’ll want to look into some PPE for your eyes and mouth as well.. Surgical masks and splash goggles will do the trick. If you can, change before you get home, and wash your scrubs separate from everything else. Also consider getting some shoes that you only wear to the care site. People often miss that they pick up all sorts of stuff on their shoes, then track it around their house. Then your cat walks around and puts her paw on your face…. you get the picture.
    I work around a lot of chemicals and my work boots never even get to my car.
    If you need something more, (maybe some chemicals are involved) Tyvec or vinyl (check re-activity of the chemicals) suits will keep out a lot of particulates and most non-industrial chemicals. A different kind of facemask may be in order depending on what you’re doing. OSHA has a lot of info on PPE.
    Good luck.

  9. pandora says:

    Running out the door to the hospital, but wanted to reply. I’ve found a cleaning outfit that specializes in this stuff (not to share too much, but infected human feces. Sorry.). And Medicare will pay for 20 days of rehab/evaluation IF he spends 3 midnights in the hospital after he is officially admitted – that’s one of the things I’m checking on today. If they try and release him early… we might have to go radio silent!

    I’ll report back later… once I get home… and open a bottle of wine…

  10. mediawatch says:

    In addition to Easter Seals, try the Delaware Aging and Disabilities Resource Center (ADRC) — http://www.DelawareADRC.com, of 800-223-9074.

  11. Another Mike says:

    I second what Tom said. Check out the Jeanne Jugan Residence in Newark, run by the Little Sisters of the Poor. I’ve been there many times and have never met a resident who doesn’t love it. I don’t know if they have a waiting list or if there is room now, but I would definitely check it out.

  12. Ivolunteer says:

    After personally checking out 15 assisted-living facilities in New Castle County and developing a spreadsheet on the pros and cons of each, a friend of mine chose Methodist Country House. He has been more than pleased with the facilities, the staff and the other residents. FYI.

  13. knows better says:

    We have been down this road TWICE. Will send an email soon but Ben had some great advice! others did as well but we learned early on that checking for uti was best done weekly. Stop by Walmart and buy Depends and make sure FIL wears them. He will learn to appreciate them and in time won’t fight the use. It’s going to get a bit better soon but not much and in due time…well…
    As for the siblings if you don’t get them involved NOW they will let you do it all from this moment on. Tell Mr. Pandora to assign the work and stick to it or it’s going to lead to issues down the road. Been there. Done that. All family members have ‘strengths’ and abilities and all of you need to be a team and if not the time to weed them out is NOW.

  14. Couldn’t agree more about Little Sisters of the Poor. To them, it’s a calling, not a job/imposition. And they’re not looking to make money by providing minimal care for maximum profits like too many other places. Stay away from practically any for-profit outfit.

  15. pandora says:

    Thanks so much everyone. My brain is mush right now. Big day, and not a lot of good choices. I’ll report in tomorrow. I really appreciate everyone’s great ideas and thoughts. Also, thanks to all of you who contacted me by email.

    Mr. Pandora sends his thanks, as well.

  16. Frank says:

    I can’t find a way to say this privately, so I will say it publicly.

    Ciro Poppiti is good people.

    I know. He once helped me and my family deal with an issue, and I still appreciate it 30 years later.

  17. Pencadermom says:

    Pandora, sorry to hear about your situation. Life coming full circle, and taking care of our parents who took care of us. Hard, very very hard, but natural. Just wanted to mention that Mr. Pandora might well be naturally immune to c. pox. I was tested back when my kids were getting the vaccine. My doctor told me I was either naturally immune or had it as a child so mild that no one noticed. Tell him to get tested next time he goes to the doctor, it’s just nice to know.
    If you are going to help your father in law get into an assisted living place, try to make it a priority to look around, a lot of them have waiting lists. find one and get on their list asap. My thoughts are with you tonight and I hope your father in law is feeling comfortable.

  18. Norinda says:

    Consider a Palliative Care & Social Work Consult. Being the complexity of his medical conditions, not sure of his age, Quality of Life is the most important factor to consider going forward. Is he Alert & Oriented? Does your father in law have an Advanced Directive? Do you want your father-in- law at home or to langer in the hospital. The longer the stay, the more increase for hospital infections & complications. Increased Medical Costs! If your father-in-law alert and oriented, when discharged, get an Advanced Directive from him. What are HIS wishes moving forward? Then, you & your family will be at Peace-moving foward. Best Regards.

  19. pandora says:

    We have the medical directive and power-of-attorney. Unfortunately, he’s extremely disoriented and his physical capabilities have deteriorated to the point that he can barely walk – and he needs assistance with that – altho, that may improve. He’s in his 80s and had suffered a severe head injury years ago, so he’s had reduced mental capabilities for years.

    Taking care of him would be a full time job, mainly because he doesn’t listen – He will do what he wants, even if it causes him injury. Yesterday, he tried to get out of the hospital bed. I told him not to and I would call the nurse. He brushed off my words and started trying to get out of the bed. I called for the nurse and tried to hold up a 195lb man (basically I wedged him against the bed). He won’t take medication, tries to remove his IVs, won’t consent to blood tests, etc. in the hospital – unless I get really bossy (and then I feel guilty). So even with him in the hospital we’re on call. Moving him into our house is not an option, which also makes me feel guilty, but I simply can’t do it… nor do I want to. (There’s that guilt again.)

  20. Joanne Christian says:

    pandora–sorry I am just seeing this now. Off line, and privately I hope to be able to navigate some of your concerns if we talk.

    But until then…..

    1) Welcome to the Sandwich Generation

    2) Get your hubs to the doctor (or doctor can order by phone or you can pick up a request) ASAP for a “varicella titer”. Oh no he doesn’t get a pass, until it’s verified! It only takes one pox for some people to pick up immunity to chicken pox, or others to acquire passive immunity. Given your husband’s general age, he dodged the symptoms but I doubt the disease. Unlike the opposite genetic wonder–one of my kids–who had chicken pox THREE TIMES, until her immunity held–trust me a genetic abberancy, don’t fret young mothers reading this. 🙂 He needs to be confirmed, because the shingles is only going to come back……again, again, again.

    3) ABSOLUTELY all MFing BILs, SILs are pressed into service whether they have the time, money, inclination, location or wherewithal. Unless they are in DIRECT care currently of another family member in parallel need–they don’t get a pass. And believe me, there are plenty of jobs that can be designated.

    4) Drop the guilt, and pick up his plan. NONE huh?! Bet, your FIL has directed funeral prep, cemetery stuff etc.. But no mention of where care would be huh? That’s because culturally (right or wrong) we have grown into a “somebody else model” of caring for us in our latter days, unless it REALLY was discussed, rooms added/refurbished etc..I’m not kidding. Pops no more wants his grandchildren remembering his odors, and his DIL turning a dining room into an infirmary during declining years, than a dog wants fleas. He doesn’t want to be resented, he wants to be respected–so you leave that to folks, venues, who are prepared and able to maintain that dignity, and boundary while you visit VERY OFTEN. That’s your obligation, as he bridges to full care. You have to remember, this is not a 3 week hospice situation you are shunning away from—this is a protracted arrangement that could go on for YEARS because again, our society has decided its more important to reduce an adult to incontinence by controlling their blood pressure, than to let them bust an artery telling a great story at a family reunion. Gather yourself quick, OVERSEE the care in their declning years, but don’t OVERTAKE. Otherwise it overtakes you, your marriage, the kids, the house, your health–and then we are either getting you hospitalized or picking a jury :). It is TOUGH, LABORIOUS, PHYSICAL work 24/7, matched by the equally emotional challenging, declining and shifting mental configurations. Got it?

    4) At least you ADMIT you don’t want to do the care……..:)

    5) We’ll talk…..

  21. knows better says:

    Joanne Christian offers sage wisdom and knowledge to Pandora. We’re betting she’s been there and done that more than once.
    Joanne Christian sounds like a lady that will pull no punches and the wife and I hope you, and Mr. Pandora, speak with her soon!
    Joanne Christian had us at Sandwich Generation.

  22. Aoine says:

    I agree, With Joanne,

    Recently been down this road too. You know how to email me as well
    Would be happy to help,with anecdotes of our experiences and other issues.

    I hate to say this but with a disoriented, combative patient YOU cannot take on that care yourself. It’s just not possible, please let yourself off the hook here.

    I also hate to say start talking to Hospice. NOW, We did and by the by the time they got to us, gave us the information we had not time to use it as ourfamily member passed away they next day. They did come and were wonderful, but know all those options now , so the options will be familiar.

    If I can do anything , I am here. My sympathies for you and the family.

  23. Robert Keesler says:

    Sorry to hear you’re going through this, it is a heavy burden and stressful to be the caregiver. Not sure of your age, and this won’t help your FIL’s current situation, but I’d recommend looking into long-term care insurance for you and your husband so you are both well taken care of in a situation like this. I wish you the best.

  24. Dave says:

    1. Make sure the hospital has officially admitted him. Hospitals often keep patients under observation rather than officially admitting them because they are penalized by Medicare for their readmission rate. If he gets discharged, then it becomes a merry go round.
    2. Once he is stable and no longer requires hospitalization, he should be going to rehab. This is covered by Medicare for 30 days (and up to 90 as long as he shows improvement). The purpose of rehab is to get the patient to the point where they are able to care for themselves (Activities of Daily Living – ADLs). From this they will develop of a plan of care to include therapy. However, YOUR objective is to keep him in rehab long enough to be able to apply for Medicaid and to wisely make decisions that will provide for his long term care. You cannot do that when you are faced with the day to day situation. Go see the hospital social service representative immediately to facilitate this. You should be able to choose between several rehab facilities (space provided). So the outcome is for him to be assessed and receive the necessary care and for you to have time to get his affairs in order and to make arrangements for long term care, including Medicaid.
    3. Immediately begin the Medicaid process. Some recommend an attorney for this. Some do it on their own. Because Medicaid is needs based, there is considerable verification of assets, both financial and physical. Note, his assets not the family’s. Not sure about Delaware, but many states have an online application process. If he is a veteran, each state has a veteran representative(s) that can provide some assistance in the process (including a pension where there is a need). Medicaid will cover nearly all the costs of a long term care. Most long term care facilities will take patients on a contingent basis when you have conditional approval of Medicaid. For timeline purposes you have 30 days from the time he hits rehab (but as a I said, you can get to up 90 days depending on the rehab facility’s assessment of his condition).

    Lastly, he sounds like he needs round the clock care and supervision. The ADL assessment is the formal method that defines what state he is in. There is simply no way this can be provided in the home (unless one’s resources are pretty extensive). Both for his and your quality of life, a facility appears to be the most appropriate solution where he is receiving the care he needs and you are able to take a breath, visit, and enjoy the remaining time without stress.

    The first stop is the hospital social services folks (usually the Director of Social Services)(the rehab facility will have one of these as well) who can explain the process that goes from hospital – rehab – long term care. Under no circumstances should you agree to discharge and remove him from hospital – no intermediate stops – hospital, rehab, LTC in that order or it becomes a merry go round. Do it once. Do it well.

  25. knows better says:

    Even more great advice being offered! Social services may be called “patient advocate” at some facilities.
    If you do have the ability to get VA benefits stay with it! They make it hard and at times you wonder if it’s worth the hassle but in time they will come through. It took almost 2 years for us but when if finally came through ($1600 per month!) it was a HUGE help. That was for a WWII vet that never asked anything until he couldn’t so we did! One hell of a generation!

  26. pandora says:

    Thanks for all the wonderful advice. Just got home from the hospital. One of the biggest problems is that there’s no good way to deal with this stuff over a weekend. We have meetings with doctors, social workers, rehab and hospice care reps tomorrow. We’re just hanging until then.

  27. knows better says:

    Well we hope that when it’s all done and a plan is determined a large bottle of wine is ready for Monday evening!

  28. Norinda says:

    You have the right multidisciplinary team in your corner. Hang in there!