Emergency care for a parent with cognitive decline when primary caregiver husband needs to go to the hospital. Any ideas?

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Emergency care for a parent with cognitive decline when primary caregiver husband needs to go to the hospital. Any ideas?

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I saw a similar question to mine but I have a slightly different twist, my parents live in Florida, my sister and I live in California, there is a 24-hour best case turnaround to get across the county. This past week my dad needed to go to the hospital late at night with chest pains and difficulty breathing. Fortunately their neighbors were able to help get him to the hospital, and stay with my mom. She doesn’t drive, gets lost really easily. I would love to know if there is some support organization for my mom, who needs help until I can get to her if this occurs in the future. I would love to have a plan instead of hoping the neighbors are available or worse my dad doesn’t get help because he is afraid to leave my mom alone. Any advice would be appreciated.

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Welcome, Clb!

I'm going to turn this around, please don't take offense.

I would be more worried about DAD'S health right now. It sounds like mom's care is getting to be too much for him. How much help does he have coming in?

Who stays with mom when dad goes for his cardiac testing? If he needs a long hospitalization?

I think it may be time to have a tough talk with dad about a different plan, maybe one that involves moving someplace where there is always a staff person on call, or moving closer to you.

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When I cared for my mother I engaged a two tiered system of emergency care. First, my mother's youngest sister (22 years younger) was in good health and had a guest room Mom occupied for 1-3 days several times for scheduled events and was usually available and certainly willing to care for mom if needed. Maybe you could find a friend or retired nurse who would be willing to fulfill this role? Second, I contracted with an AL/MC for respite care. If a room/bed was available they would take mom with an hour notice. Before mom was accepted as a client, they preformed an assessment of her needs and she spent a day there in their day care every 3-6 months before covid. Something like this may be very useful for you if you need somewhere safe for one parent while you need to stay with the other in a hospital. I never had to use this option, but it gave me a lot of comfort to know it was available if needed.

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Thank you for your advice this forum is so helpful. I am grateful to have this information. And I feel like I can make a plan and work towards having proper care for both of my parents.
Thank you!

(4)

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My father was in the exact same situation, caring for my mother and so afraid to leave her that he never took care of his own health. He died from a treatable condition which he refused to deal with because he didn't want to leave my mother.

He did have to go into hospital a few times before he died and the only solution we found was an on call paid caregiver. I lived abroad and my brother several states away so we weren't an option. We eventually had to find respite care as my fathers health issues became more frequent. This is also a good option.

I have two recommendations, you dad needs to take his health seriously. If he needs any type of treatment, get it done, and find temporary care for your Mom. When my dad died I couldn't take care of my mom and she is now in a facility and we have no other option. My second recommendation is start finding paid caregivers that your father can call at any time. They do exist. Your dad will probably not want paid care and think he is totally capable of doing everything himself. That is not true and puts both him and your mother in danger. If they want to stay where they are, they need to understand that they need more help and you can provide it.

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Thank you so much for your insight, sorry for your loss. This along with everyone else's comments are so reassuring. He fortunately does seem to take care of himself, and having your example as to why this is important will help in my conversation.
Thank you!

(4)

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Depending on how hard-headed and hard-nosed you think you can force yourself to be, it might be no bad thing not to let anybody know that by busting a gut (and presumably your bank balance) you can get to your mother in 24 hours.

I don't *know* that this is true in your parents' Florida location but I can tell you what would happen here (and although of course systems vary, they generally have to do similar jobs).

The paramedics are mandated reporters. When they collect one half of an elderly couple and become aware (from observation or reports) that the other half is unable to cope alone, they report it to APS or the equivalent, and they do that immediately. APS then refers the vulnerable person to whichever service they think best. Our service's response time for such a referral is two hours, which means that within 2 hours we will have telephoned or visited the person being referred, we do an assessment of need, and then we either provide calls or escalate the referral to other services such as urgent respite care. We probably would ask the neighbours, too, especially if they've volunteered in the past; and we'd contact any family we had permission to contact.

In other words - your mother will not be left alone and forgotten in her house, not even if the neighbours have gone out to dinner.

I also don't know how brutal you're prepared to be with your father; but if he's afraid to leave your mother alone and you really think he might keep quiet about feeling ill for that reason, perhaps he had better think on what would happen if he died in the house and nobody knew because he'd decided not to call for help. Does he wear a falls alarm or other device?

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Thank you for your response. I wasn’t aware of the Paramedic’s being responsible evaluating and possibly taking both elderly parents. I will make sure my dad is aware so that could put him at ease in the event that he needs emergency care.
Thank you!

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By ""independent living" do you mean a senior community with Assisted lining and LTC too? If so, maybe its time for your parents to think about Assisted living. Dad can live there with Mom. This gives him some freedom knowing she is cared for if this happens again. Also, gives him freedom to get out of the facility. Enjoy the outings and activities.

Husbands Aunt and Husband are in a really nice community in Homosassa. They live in a cottage with an AL and LTC care provided. Even though they live in the cottage, for an xtra charge, they can get help. Like an aide to help bathe one of them. I would think if one ended up in the hospital the other could be cared for in the cottage or be taken to the AL side till the other spouse can return. Probably at a cost.

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Thank you for your response, I will try and see what assisted living places are available around their current location. The struggle for my dad is he loves the neighborhood and neighbors. Starting all over again in a new assisted living space would be hard but maybe necessary.
Thank you!

(3)

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Techie, you raise an interesting proposition - contracting with an AL/MC facility ahead of time, with a pre-assessment beforehand.

We encountered some serious conditions when a windstorm knocked out power in my father's area. He was on oxygen 24/7 and had a limited supply left for that day. I wasn't even going to consider trying to haul the concentrator over to my house; it was just too heavy.

(In retrospect, I should have called the supplier and asked if they would furnish the equipment temporarily at my house.)

The rehab facilities where he had previously been wouldn't consider taking him, nor would AL facilities, which required a chest x-ray before even evaluating a decision to take him.

Was this Al/MC facility one with which you'd had previous experience? Large? Small? Did your mother have to get a chest x-ray hours before she came to stay temporarily?

I think the area might play a role as well. I get the impression you're in kind of a rural area; we're in a heavily populated, congested area, with dozens and dozens of facilities. Many of them "pick and choose."

Thanks for any insight you can offer.

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They required an assessment and access to Mom's medical records. I don't remember a separate chest x-ray, however Mom had one at her doctor's office a few months previously. The primary place I contracted was a close, new, and relatively small place with total capacity of 48 (my SIL resides there now & my father's cousin was a resident for about 3 years). I also contracted with the MC where I had placed my father, reasoning one place or the other would have a bed. I usually took the day care days when her regular ADC was closed (holidays). There was some extra expense in contracting two but I figured I saved enough money taking care of Mom at home to make up for it. Mom and Dad's money outlasted them so I think I did okay.

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What are your mother's health conditions? Does she have dementia and your father is her caregiver?
If such is the case the hospital, local police department, and the local paramedics in your paretns' area can be informed that if dad has to go the hospital for some reason, mom will also be admitted to the hospital or put into respite care in a facility until he gets out.
Please speak to them about it. This way if you had to get there, at least your mother would not be left alone in the house.

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Thank you for your response. My mom’s heath is fairly good, she suffers from some back pain and circulatory deficiencies and some high blood pressure but outside of that generally she is well. We had her evaluated a couple of years ago and she was given a cognitive decline diagnosis, with Covid pandemic, time and the isolation her memory has really gone, she cannot remember much at all short term things and gets extremely frustrated by it. Her dad had Alzheimers and she watched him deteriorate and it scares her as she doesn’t want to be a burden. This stage of life is so sad difficult I feel like she struggles with the fear of the unknown.

(4)

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In an emergency case like this paramedics would transport both to the hospital and mom would be admitted as well.
If there is a planning stage mom can go to Respite care in a Memory Care facility. This has to be scheduled, she has to have a physical, or doctors letter indicating that she is in good health. She may also have to have a TB skin test, depending on where they live she might have to have 2 done. (there is a blood test that would replace both skin tests) And the facility has to have a bed/room available.
Also if this is planned you or your sister could also come and care for mom as well.
Personally I think Respite stay in Memory Care would be a better option. You would be able to care for dad as well visit when you were there. And dad might be better if mom is in Respite for a while while he concentrates on his health.
If mom is on Hospice you could contact Hospice, they will arrange a Respite stay that is covered by Medicare/Medicaid as well as most other insurance. And if they have room in the In Patient Unit they may even be able to do a bit longer than what is normally covered so dad can recover.

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Thank you for your response, fortunately I can work from anywhere so I plan to stay here until I have things figured out and my dad feels better. The hospital told me about respite care as well so looking into that option. Thank you for your insights.

(3)

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You could contact a few caregivers who have recommendations from friends or neighbors and ask if they’d be willing to be on call for your mom in an emergency. It’s a stopgap measure but workable if set up beforehand.

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Yes, I have talked with the neighbors that helped and they are amazing, they are willing to help however they can, I am looking to make sure I know all the options as they may or not be available so would like to have a solid plan.

(2)

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Even though your dad may want to defer discussion about getting help caring with your mom, this topic is too important to drop.
It is common for the caregiver spouse to become seriously ill/die before the dependent spouse.
When that happens, the dependent spouse has to have 24 hour care at home until ALF or memory care or SNF placement can be arranged.
In some areas APS might be able provide a very short term (24 hour) caregiver to an elder who can't be left alone...but relying on EMS to call APS is a thin straw.
Contact the local council on aging to find out which area agency on aging covers the community where they live. These agencies provide detailed information on all aspects of elder care, including some you may not have considered. You may be eligible for an assessment of care needs, based on certain criteria. Start with this source of information - covered by federal funds, so they already paid for the information.
If dad totally resists conversation about moving to a setting with caregivers available around the clock, then the idea of finding a non medical home care agency that allows you to enroll them and get all the documentation done in advance, so they can show up in an emergency is the way to go.

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Thank you for your response, my sister and I are looking into some services as well

(3)

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Thank you, trying to get that plan together now. I dud find out that nursing homes offer respite care as well. Fortunately, his heart is fine, it ended up being a bout of pneumonia and honestly an anxiety attack, but you raise a good point, he loves the neighborhood they are in so I haven’t pushed the move thing too much. Change is difficult but at this point maybe necessary

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It seems your parents need much more care … you can’t depend how on neighbours to provide it !!!!
it’s your responsibility to set up… either live in or assisted facility .
that’s obvious !!!

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Actually I would think it is Dad's responsibly.

(1)

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I don't even know if this type of care is available, but I thought I'd throw it out there as something to check into. I think there are au paires, women who will stay in your house for free room and board, in exchange for childcare responsibilities. I don't know if similar situations exist for helping to take care of an older person with health issues, but I thought it was worth suggesting. When my mom lived with us when she had Alzheimer's, Hubby and I were able to juggle our schedules, so that someone was always with her, but that's not an option, of course, when you live in another state. When my dad's health declined due to COPD, my parents moved closer, at my mom's urging. At the time, it was so that I could help her with my dad's health, and it turns out, I helped her too. Best of luck. Being an in-person or a long distance caregiver is challenging on so many levels.

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Thank you for opening this discussion. I have been concerned about what might happen with my husband if I were to need an ambulance to ER. Our two sons are local but it would take 30 minutes minimum to get to us and on occasion both have been out of town at the same time. After reading all the comments so far I plan to contact our local EMS to see what their policy is if I have an emergency. Our county has a website where you can put info on for EMS like codes required to open doors, etc. I am going to update my info to indicate he will need care if I have an emergency. Clarifying all this information will help our sons better understand what they may need to do in an emergency. The last thing anyone would want to hear is your parent has been taken into protective custody if you have never heard of it happening in a case like this. Some professionals tend to use language that sound a lot worse than it is.

I also plan to contact our Area Council on Aging to see if they have detailed information. When COVID began, I stayed stressed out because of strict EMS and hospital policies and I did not know what would happen with my husband if I were to get it. I may have relaxed too much now since their policies have relaxed so I need to fine tune our emergency plan. Thanks again for opening this important discussion.

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Maybe its time to start with PT caregivers from a reliable agency. The agency staff would be able to have all your parent's information in case of an emergency.
Even if their regularly assigned caregiver is not available someone would be sent to stay with the parent left alone. Start with a couple of half days to give time to know your parents and their needs.

Another consideration is a lock box for the door so needed staff can access the home with the code.

Both parents need some kind of a life alert necklace to call emergency help.

I have no idea about their ages or health issues but we have enjoyed using an in home monitoring system to audit activities.

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If neighbors are friends(Ly) would it be possible to hire one of their older children or family member to come over when this happens. Fix up a spare room and pay them a reasonable amount. I think some mature kids would consider it easy money and a useful task. These days a lot of people could use some extra cash.

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One solution may be to contact an assisted living or memory care facility and set up a plan with them for respite or emergency care. When I was caring for my dad, I set something up when I desperately needed a break. I don’t know your mother’s needs, but you could take her there so she’s familiar with the facility. It’s worth a try.

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Local Senior Centers have staff that can help direct you to helpful services for your LO's.

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Im not sure what you mean an organization to help your mom,? Do you mean help at no cost?? There’s agencies or independent caregivers to assist I’ve never heard of an organization for free help but I’m not sure if I understand the context

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You aren't going to find a free service. Even a paid service can be put on the plan of 'what to do', however you won't be able to call one of them at 11pm tonight and expect someone to show up that night (and possibly in the next day or so). You might call some of the in-home health care companies near them to see how they could help you. It may also be time to arrange for some day time and night time assistance for your parents (if it can be afforded). If they are already part of a regular service in their home, the attendants would be more likely to come in an emergency. In home care is very expensive, so income/ability to pay will determine if this is possible.

I would include the neighbors who already helped you to create a plan. Ask if any of them would be willing to sit with the at home parent until you can get there. And then, get your flight booked immediately and get there. Wouldn't be fair to these neighbors for you to book a flight days away because of ticket price. If none of the neighbors want to be part of your plan, then ask them if there is anyone around the area that could go to parent home with very short notice.

It's also possible this is the time to talk to your parents about moving closer to you and sister. You need to be able to shorten your response time to help them because a similar event will happen again. You can't depend on the neighbors. If you rely on them too much, eventually someone is going to become concerned for their safety and no family involvement - parents will be reported to adult protective.

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It's time to move your parents near you and your sister; they can live together in Independent and Assisted living or in separate spaces at the same location where they have support 24/7.

If you get resistance from them, please schedule a family meeting (Zoom or in-person?) with a Geriatric Psychiatrist and an Elder Law Attorney (to get papers, discuss potential for Medicaid and affairs in order).
Call, "A Place for Mom" (or senior care specialist shown on the right side here, and tell them what your parents need and seek out locations that offer joint arrangements for as long as possible.

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They shouldn’t be forced to move esp if that’s been their long time home, they have a important sentimental attachment to that, if they require someone there w them it should imo be in their home

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I don't know of any on-call voluntary (free) support system, but could you establish a relationship with a home health care agency that might provide emergency coverage? If they they have your information and method of payment and some way to access the home, would they be able to provide someone to cover until you got there or made more permanent arrangements?

As short-staffed as agencies are, there may not be any with on call coverage, but it's worth investigating. If you have not established prior contact, an agency will not just come in cold and take over.

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Take them both to the hospital. As a RN, I have cared for the "one with dementia" while this "caregiver one" receives medical care until family can take over.

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Clb0321: Perhaps the parent with cognitive decline requires residence in a managed care facility.

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Plan A (for now) - talk to helpful neighbors about situation and see who is willing to help when/if needed.

Plan B - start making plans to move them close to you or one of you moves close to them.

Plan C - Find assisted living in their area (or yours) and make arrangements for them to go there.

I doubt you will find any other services, free or paid, that can meet your needs since you never know when the need will arise. Agencies like schedules. Friends and neighbors are not always available. It comes down to the family to solve this problem.

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Emergency care for a parent with cognitive decline when primary caregiver husband needs to go to the hospital. Any ideas?

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