70-year-old father living with Alzheimer's for 9 years and has sudden decline & hospitalization

John_O

Hello. My father is a retired Pediatrician. 9 years ago he was diagnosed with early-onset Alzheimer's Disease and has slowly been in need of more help and assistance over that period. He is a widower (my mother passed 9 years ago) and has been living semi-independently since. In the past 2 years his care needs increased, and we hired an Aide to be with him at home several hours each day. Over the past 3 months his care needs increased as he no longer was able to clothe himself or clean-up for himself. By the start of the Summer the Neurologist advised that he was in late-stage Alzheimer's. 

In late-June we heard from his neighbors that he began wandering in the hallways of his building and he started having hallucinations. We decided it was time to move my Dad into Memory Care (he was beyond Assisted Living at that point). We found a lovely facility close to his home and made arrangements for him to move in on July 2nd. The facility assessed him at Care level 2 which would assist him with daily needs, but he would be able to participate in activities.

Unfortunately, on July 1st, the day before he was to move into Memory Care, my father fell in the morning while he was by himself. It took two hours before the Aide arrived and found him on the floor. We took him to the ER for an x-ray to check for broken bones, and while he was in the ER he quickly fell into a state of delirium. He began shaking and coming in and out of consciousness. He was admitted to the hospital, and it was determined he had aspirated and had pneumonia, and this was the reaction (completely secondary to his fall). 

He has been in the hospital for the past 3 weeks and has declined further and further. They have tried treating him with antibiotics, but his condition has not improved. The neurologist team did various scans and tests but found no cause for this other than the infection. We are at a point now where he has very bad seizures, is not able to recognize us, and is incontinent. They are trying more antibiotics and seizure medication to hopefully stabilize him.

I believe once he is stabilized that we are beyond Memory Care at this stage. He is in need of 24/7 care and needs constant supervision. The doctors don't feel that he will be able to return to baseline. I am interested in exploring options around Nursing Homes or at-home nursing. This is completely new for us so I'm not sure what the right options are (or frankly what to do). Hoping for some guidance as my father will hopefully be discharged in the next week and I need to make some decisions. Thank you.

zauberflote

@John_O welcome. I am so sorry you and your dad are going through this. It does sound to (inexperienced with nursing homes) me like he will be beyond most MCF's' capabilities. If you choose nursing home, check into whether they can keep him if it becomes necessary to get him on Medicaid. Nursing homes are pricey, and full-time in-home care even more pricey.

Something else you may want to look into now while you have the emotional bandwidth is hospice. Hospice is not only for the last days of life. My mom was on hospice for 8 months and much the better for it; my mother in law for 18 months and ditto. We are not giving up when we call hospice: we are actually contributing to our LO's quality, and even sometimes even extended quantity, of life. I'm not trying to push anything at you, just saying that my experiences with hospice have been very beneficial to all.

Others will come along with excellent advice and support.

M1

John I agree with the hospice suggestion. I'm so sorry, and it's hard not to feel that that's too far a leap, but given what you're describing, it's probably not. And I bet your dad the doc would agree. Worth a call while he's still in the hospital. Do keep up posted.

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MN Chickadee

Call the discharge planner with the hospital and tell them you need a skilled nursing home, they can help find a bed. If you can't care for him at home tell the social worker that, they cannot make you take him home they would have to find placement for him. You can enroll him in hospice no matter where he is at, facility or home. Hospice nurse would check in as often as his condition requires (can be anywhere from weekly to daily.) They will send an aide once or twice a week to bathe him, and some hospice agencies have other staff like spiritual care or music therapists. Hospice will also provide any equipment he might need, like a hospital bed, wheel chair, etc. They will help make sure he is comfortable and guide you through your remaining days together, however many there are. There are many hospice agencies to choose from in most areas. Call a few, they will come and evaluate him. If you bring him home you will need to either have family members or hired help 24/7. Hospice does not provide that kind of help so you would have to pay out of pocket. He will need to be turned often to avoid bed sores and have diapers changed. From what you are describing it doesn't sound like he has real long. There comes a point in dementia where nothing can be done, and the deteriorating brain causes the rest of the body to shut down. Is he eating and drinking? The sudden decline at the end is hard and startling no matter how much you've seen it coming. I'm sorry you are going through this.

mommyandme (m&m)

My mother passed at home with me and hospice care. At her transition I did not have help from the aides whom helped me for the two years prior to her sudden decline, due to covid being present. Covid and her being at level 7e Alzheimer’s, she wasn’t coming back from that. By the way, my mom was with hospice for almost two years so, bringing them in doesn’t mean a death sentence. In fact, often patients get better while hospice is on board. Having said all that, if you’re able to private pay for help to come in AND bring in hospice with all the supplies and equipment they provide, maybe he can live his last days at home. I suppose you or the aides would need to do most of the hands on dirty work, but if he is getting close to transitioning, hospice will begin to come everyday. Normally they come once or twice a week. Otherwise, a nursing home seems like the route to take. Hospice will also be involved at any facility he’s in when admitted to their service.

Im so sorry for this in your life.

solerdr

I am so sorry you are at this stage with your father. It is time to move from prolonging of life care to comfort care (i.e., hospice care).

As stated earlier, the hospital should have staff to assist you with setting up hospice care. I recommend trying to find a Nursing Home that will take him, as they will have staff who can change him more often that an in-home aid who comes once in awhile. Plus Hospice care folks will come to the Nursing home to check on your father.

We had to do the same for my father and what helped was knowing that we were trying to make him comfortable, which is what hospice is all about. Another thing to think about in preparation for your father to transition is: funeral or cremation? We set up cremation with local crematory. Pastor, priest, religious leader to come perform whatever ceremony (e.g., last rites) for your father. Additionally, get hospital gowns, or make shirts that are easy to put on and take-off of your father. We took XL t-shirts, used scissors to split the shirt up the back and attached two velcro attachments to create a "gown shirt" which made it easier for the staff to bath my father, and still provide my rather with his dignity by keeping him covered up in a nice shirt.

I hope these suggestions help.

May God's light guide your day and His spirit bring you peace.

John_O

Thank you all for your very meaningful recommendations and suggestions. I greatly appreciate it during this very tough time.

MN Chickadee

John I also wanted to add my mother developed seizures late in the disease. The anti seizure meds can take some time for the body to adjust. She was extremely out of it and tired the first few days of taking it but much of that did wear off after a week. It could be he might regain some level of alertness with time. For now I would focus on gathering any family from out of town and saying what you need to say. Given he has pneumonia he may progress quickly. Assume he can hear you and understand because we simply don't know what people can do at this point. The final stretch was utterly excruciating for me but also powerful and there was almost a mystical aspect to it, or maybe that's the way my brain has re-worked it in hindsight. Some PWD have a surprise for us at the end. A moment of clarity, a smile, a word, or something their loved ones did not expect. A connection at a time we assumed that was gone. Watch for those moments of grace, leave no regrets, make his final descent comfortable and peaceful for him however you can. Let us know how things go, this is a very caring community.

John_O

One follow-up question for your consideration. The doctors in the hospital wish to discharge my father into a subacute skilled nursing facility first for short-term care, and then into long-term care. Because I already signed with the memory care community (the day before my Dad fell), the memory care facility is insisting that he should come there and we pay additionally for skilled nursing care on top of the memory care. In my mind that's us paying for many accommodations and amenities he won't need now in his current state.

Has anyone experienced something like this? In my mind our next destination for my Dad is a skilled nursing facility, not a memory care facility. Thank you.

mommyandme (m&m)

Im not experienced with facilities except for when I did my CNA certification, but sounds like a Skill Nursing facility would be best for you and your dad. I suspect the MC isn’t keen on losing the bed. Seems kind of senseless to double up care in the MC since he’s not even been there. If there comes a time that he rally’s back then maybe a MC could fit. Also… I believe he can hear you too.

Just my two cents.

Marta

Perhaps you have made a monetary commitment to MC?, which would likely affect decisions on both sides, you and the MC?

Your father’s needs should guide the decision process on where he should be transferred, but I understand when financial matters get in the way of that goal.

MN Chickadee

It is not unusual for a MC to ask the family to pay for extra care from what I have read here but I never had to do that. Both facilities my mom was at provided the nursing care she needed and cared for people until the end without the family paying for outside care. It also depends on the type of facility. Some MCs are more like nursing homes and some are modeled more like assisted living with added safety features. This can vary by state licensing board, by company ownership, and more. One of the facilities mom was in had a tiered payment plan for care and of course by the end a person was at the highest level of that care plan but it was still a flat rate and we knew up front she would move levels and fees. She was basically moving from an AL type help to more of a nursing type without going anywhere. Adding extra help often comes up from behaviors (the PWD needs a one to one sitter for safety or behavior issues) and the facility asks the family to provide that. Is the facility able to provide the extra person-hours as long as you pay for it? Do they have enough help to do this? The extra time it would take an aide to care for him, do they have an RN on 24/7? Look at how much $ you put down with the MC place that you would lose versus how much you would spend of the care they want you to pay for. Also compare what the skilled nursing facility would cost versus the plan the MC is proposing. Usually a SNF is more than a MC and it may be comparable in the end IF they are able to provide the nursing he needs. In the end go with your gut. You know his needs best and those needs have to drive the decision making.

John_O

Thank you all above for providing your advice and comments. Sharing with you that sadly my father passed away last week at the age of 70 in the nursing home. Following his hospitalization he was not able to recover. We are fortunate that the care he received in his final days in the nursing home was superb. While we are very sad at this time, we are also comforted knowing he is at peace.

I very much appreciate this forum and all your support during the past two months. I plan to continue coming to this forum to assist others as best I can.

Warmly, John

M1

John I am sorry for your loss, but glad he is not suffering. Thank you for the update and peace to your family.

MN Chickadee

I am sorry for your loss John. I'm glad he had a peaceful exit. You did a good job of giving him all you could to be comfortable. Take care.

Marta

Thank you for letting us know. May he rest in peace, and may you live in peace, knowing you did everything you could.

jfkoc

So very sorry...thank you for taking the time to let us know. I too hope you will find some peace as you move through the days ahead.

-Judith