Unsure Of Next Step - Continue Home Care Or Consider Nursing Home? | Caregiver Action Network

Unsure Of Next Step - Continue Home Care Or Consider Nursing Home?

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Unsure Of Next Step - Continue Home Care Or Consider Nursing Home?

My mother was living with my sister but moved in with me after my sister passed away. That was 10 years ago. Aside from a bad case of stubbornness, she was healthy. Then. Lately, though, her legs and her mind have gotten weaker and she’s been falling quite a bit. In the past couple years, she’s fallen, at least a half dozen times – that we know of. She doesn’t always tell us, which is a problem in itself.

Recently, she fell and it took us awhile to get to her – (1) she didn’t call out and (2) she had locked the door to her room. It wasn’t until lunch time, that we found out she had fallen and only because I knocked on her door to call her to lunch. When we finally got in, we found her on the floor. My husband carried her to the bed with her crying out in pain. X-rays, thankfully, revealed no broken bones – the diagnosis was that she probably pulled/bruised her hip/pelvis really badly. Now, she can’t get on/off the bed or walk by herself. That was a week ago. However, her condition seemed to have gone downhill pretty quickly about 3 days ago. She didn’t want to eat solids because she said it made her mouth sticky so we’ve been feeding her Ensure. And even then, she’s not taking in a lot – she just doesn’t want to.

Then she’s not calling us when she needs to go to the bathroom. After she soiled the bed a few times, we finally had to get her Depends. The bigger concern for us is that she doesn’t seem to know/realize she’s already gone. When we take her to the bathroom is when we discover the Depends is full. Sometimes very full. Prior to needing the Depends 3 days ago, she would always call us when she needed to go. The point I’m trying to make is she KNEW to call us. The docs wrote it off as she’s in pain and just didn’t want to move to go to the bathroom. That’s fine but that doesn’t address the part where she didn’t know/realize she had gone in the Depends or that she had soiled herself. Speaking of not knowing/realizing … we bought a wireless doorbell so she could call us when she needed something. There are times when she’s pressing the button and when we walk in the room, she’s got a death grip on the doorbell button but doesn’t realize she’s doing it. When I tell her she’s been ringing frantically, she says no, she’s not called for us as she’s staring at the doorbell button in her hand.

I work full time. My husband works full time but telecommutes from home. We both also travel for work quite a bit throughout the year. I took time off when my mom fell but have since then returned to work so that left my poor husband at home with her. My husband has been so supportive and wonderful during this entire ordeal. He’s helped me carry/lift her from the bed/to the bed/walk/etc. I just don’t feel it’s fair to keep “imposing” on him like this. He’s family but she’s not his mother. I think his level of caregiving stops at a more generic level than what he’s been asked to do here. Normally, it’s not a problem. She was mobile and she did her thing while he did his thing from the home office. When he made lunch for himself or went to grab lunch, he would make sure she had lunch too. It wasn’t a big deal. But now that she’s not able to move herself and needs help going to the bathroom, the situation is very different. She won’t let him help her to the bathroom and I understand that. He is the son-in-law. You don’t want your son-in-law seeing you in such an “intimate” situation. She barely wanted me to see her like that. But not letting my husband help her also means she stews in her soiled Depends until I’m home from work. That does not work at all.

We’ve been discussing this and we’re at a loss as to what to do. Even after she heals from this fall, her constant falling will still be an issue. We think it might be time to consider a nursing facility for my mom but are concerned about what that would do to her emotionally/mentally. We are also not quite sure that a nursing facility is the right answer just yet – we’re struggling emotionally with that question too. Logically, we know she’ll be able to get the care and attention in a nursing facility that we’re not able to provide her. Emotionally, it feels like we’re abandoning her. Another problem is that she’s uninsured. My mom has never worked here so she’s not eligible for Medicare, having not paid into the system. I tried signing her up for Obamacare but it took 19 days before I even got to a page that didn’t say sorry, too many people are accessing the system right now. I’m still having problems with the website just to complete the account creation. Someone suggested I get her on Medicaid in order to put her in a nursing facility asap. I don’t know how long that will take or if she is even eligible for Medicaid. How would I get her on Medicaid? Who do I talk to? I’m on the verge of a nervous breakdown here. I don’t want to abandon her but I also don’t want her not to get the care she needs. We can cancel upcoming business trips temporarily but not forever. How do we provide for her and keep our jobs so we can continue to provide for her? Am I even making any sense here?? I feel like I’m just going in circles with no solution in sight. I hope somebody can please provide some insight because I really do feel like I’m about to have a breakdown here.

Storme, Welcome to this forum. There is one item you mentioned that hit a cord. ". . . her condition seemed to have gone downhill pretty quickly about 3 days ago." Have the doctors ruled out a bladder infection in Mom? Sometimes a bladder infection will manifest itself in the elderly as dementia as well as incontinence. Check it out. As your mother's patient advocate you have every right to ask and demand that this be done. There is no need to talk about moving Mom to a home if she has a simple bladder infection that can be treated. A few other ideas came to mind also. 1) Baby Monitor . . . Put a baby monitor in Mom's room in a place she cannot reach. Whoever has the receiver should hear an out-of-normal noise when Mom falls. 2) Bed Wetness Alarm . . . I checked Amazon.com & found http://www.amazon.com/s/ref=nb_sb_ss_sc_1_6?url=search-alias%3Daps&field-keywords=bedwetting%20alarm&sprefix=bed+we%2Caps%2C323&rh=i%3Aaps%2Ck%3Abedwetting%20alarm One of these, if I read correctly will attach to a brief & let the person with the receiver know if the brief is wet. 3) Home Health Aide (HHA) . . . There are good home care companies out there. Talk to the social workers at your local hospital(s) for their recommendations. A HHA (female) could help Mom to/from the toilet and not embarrass your DH (dear husband) or Mom. This would need to be ordered by the doctor. A HHA could also be a physical therapist that would help Mom with exercises get her mobility back. 4) A Bedside Commode (BC) . . . A BC could help in the interim between now & Mom getting her leg muscles back. As her muscles return to normal, keep moving the BC farther away from the bed towards the toilet she is used to using. Again, a prescription from the doctor would put the cost of a BC in Medicare hands. You asked about Medicaid which I am familiar with. In each state there is a maximum a person can have in assets for Medicaid to kick in. Check with your local Area Agency on Aging (AAA). Some states call it Family Health Services. This website http://www.n4a.org/about-n4a/?fa=aaa-title-VI should take you to a list of states. Click on the state you are in to locate your local AAA. In my state the MOST one can have in assets is $2000 to be eligible for Medicaid. That includes home ownership, investments and money in the bank. In my sister-in-law's SIS case it picks up the remainder of medical bills that Medicare did (correction) NOT cover. SIS does not have prescription coverage under Medicare, so Medicaid picks it up. SIS now lives in assisted living (not a nursing home). Medicaid picks up all but $600/mo of the bill. Here are some other websites to look at as a caregiver: Ten Caregiver Commitments (Take them to heart!) http://www.leezasplace.org/ten_comm.html The Caregiver Handbook by Washington State Most states have their own handbook. This one was found to be the best one out by one of our members. http://www.dshs.wa.gov/pdf/Publications/22-277.pdf Caregiver Stress Busters by AARP http://www.aarp.org/health/healthy-living/info-11-2012/caregiving-stress-busters.html?cmp=NLC-RSS-DAILY-BULLETIN-010913-H2 Keep posting. This is an excellent place to vent without being judged. Love, Colette
Hi Colette,
Hi Colette, Thanks so much for your insightful response. I haven't been on here much since I posted because I've spent most of my time at the hospital. Things changed (and not for the better) after I posted my plea for help here. We had to rush her to the ER and this time, after a battery of tests, they found other "complications" which ended up with her in ICU - she had a kidney infection (she's been on antibiotics), blood clots in her left leg (she was on blood thinners and 2 days ago had a filter put in to catch the clots that have not resolved), low hemoglobin (she got a blood transfusion), dementia (final diagnosis done today - no treatment plan yet), and low blood pressure (it's intermittent so no treatment plan yet.) She's been in bed for 3 weeks now so she's real weak - when the PT/OT people came she could push herself up with the walker but no strength to walk. In her "foggy" state, she's pulled out IVs several times and, today, her foley cath. She also forgets where she is and thinks she's back in her old house at times or back home instead of here in the US with us. So, now she just wets the bed constantly - she doesn't call for the nurses. In her mind, she's gone to the bathroom herself. Or, at least, that's what she told me when I asked her why she didn't call for someone to help her to the bathroom. My husband, my brother, and I spoke with the doctors and their recommendation for the next step is skilled nursing care. Due to her other complications, they don't think we can provide her the care she'll require by ourselves at home. As exhausted as we all are right now, I tend to agree at this point. As I said, this all happened right before I could sign her up for health insurance so all this will be out of pocket for us. :( I just can't wait for the hospital bill to come! Due to her not having any income, we tried to look into Medicaid for help but could never get a straight answer from anyone - some say she's not eligible because she's a permanent resident instead of a citizen and some she is eligible even as a resident only. No one seems to know - even the Medicaid attorney we spoke with. Because of this the nursing home we spoke with is now delaying her admission and she's in limbo in the hospital. We certainly can't afford to pay for this privately - that would be my entire paycheck and then some every month. The only option left appears to be to just check her out of the hospital and bring her home with us but I don't know if we can really care for her well enough - she seems to need more care now. Yes, I am freaking out. I don't know what to do!
Storme, could you speak with
Storme, could you speak with a hospital social worker to see what could be done to apply for retroactive coverage for her stay, and get her enrolled in some type of coverage for skilled nursing care?? I don't believe that bringing her home with you is a feasible solution at this point, given all of her acute needs. Keep pushing until you get some answers. I'm sorry the Medicaid attorney was not more helpful... :-( I guess by applying for her, you would get your answers...? Sorry I don't have more to offer.
Storme, Have you gone to http://www.n4a.org/about-n4a/?fa=aaa-title-VI to find your agency on aging in your state? Medicaid is a state-run agency. From experience I am positive your mother is eligible for Medicaid as a resident alien. My mother-in-law was a resident alien and was part of her state's Medicaid program. The usual basic requirements are that an applicant must have less than a certain amount in assets ($2000 in TX), and have resided in the state for at least 30 days. Hope this helps. Colette
Thank you all for your
Thank you all for your guidance. I really appreciated your help. She did get on Medicaid in the end. Not for very long, though. My mom passed away a couple months ago.
Thanks for sharing.

Thanks for sharing.


Thanks for the great post.

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I appreciate the advice I received from each of you. Thank you very much for all of your help google feud. In the end, she was able to acquire Medicaid. But it won't be for long. My mother died not long ago.