How to choose the proper last place of care?

Sorry Sue. I probably misspoke on profile. Here is the deal: Until a few weeks ago, my dementia dad, and neurotic (but not dementia) mom lived together in their home. When I say neurotic I don't mean clinically diagnosed as such, but just very OCD and tires everyone out. In her defense, I think she has been taking good care of my dads physical needs, but her intensity can flare up his dementia, it appears to me anyway. My dad is now in hospital for second time with aspiration pneumonia and the pros are recommending long term SNF or home care. The only time my dad woke today in the hospital he uttered, can I go home now. It breaks your heart, but perhaps going home, even with 24 care is out of the cards. I don't think my mom wants strangers hanging around her house. So there is a nursing home, or there is a facility nearby with different capabilities.

One of them is in memory care, but it is a full one bedroom apartment, very nice, living room, kitchen, two bathrooms. My brothers and I thought maybe my dad could go there as he would have the memory care assistance, but my mom could live with him for the probable short time he has left. Not the same as home, but at least still has his wife around instead of another old man roommate in a SNF. My mom refuses the idea out of hand. She does not want to be in an area called memory care, and while I have seen some memory care places I would agree with her on that, this looks like a regular senior apartment, but the wing is locked. My brothers and I would love if at least my dad could live his remaining days with his wife but we obviously cannot force her. We think she is being very selfish, but maybe we are being too judgemental on that. The facility says there are a number of couples there where one spouse had dementia and the other doesn't, but they want to remain together.

Your profile says that you are taking care of your mom with dementia at home. You post says your dad has dementia and your mom is neurotic. (?)

If your mother has dementia, she is in no shape (mentally) to cope with taking care of a dying husband. I'm sorry that your dad would like to pass away at home but, in this case, she should not be the caregiver.

I believe that leaves hospice at a long term care facility. Maybe you all could be there visiting at Easter.

I don't think hes going to rehab this time. Hes too far gone for rehab. Probably have to go to hospice. I guess the question is hospice at home where he wants to be, but would be a huge burden for my mom, or hospice at a long care facility. My mom is nuts but I cannot blame her for not wanting the burden of taking care of him full time.

To qualify for home hospice, your dads doctor needs to state that he has 6 months or less to live. Then the whole cost will be covered by Medicare.

Your dad sounds like he's in stage 7 Alzheimer's where the swallowing is affected. As it gets worse, your dad will have more and more episodes of aspiration pneumonia until he won't be able to eat. You will need to know what you'll want to do at that time...a feeding tube or withhold feedings. In some states, once a feeding tube is put in, you can't change your mind and take it out.

At this point, I wouldn't be concerned about where you would like your dad or what holiday he can have with you, it's where he would be cared for the best to assist him medically and for the Alzheimer's.

Hospice nurses are not at the home for 8 hour shifts. They visit a couple of times a week for an hour to make sure meds are given correctly and to assess the patient. Since your mom is elderly herself and probably burned out with caring for your dad, you would need to have caregivers around the clock to watch and assist him in his home.

If you don't get along with mom, what good would it be to have Easter at home?

A nursing home sounds like the right choice.

No one knows when someone will pass away. You need to follow the advice of the medical staff at the hospital and rehab. They know best.

Hugs, Karsten. I'm sorry things are being so rough on your poor dad and everyone who cares about him.

All I can say is if it were my Dad I'd go for comfort over clinical, every time. Even if the team can get him past this infection, at the cost of who knows what to him, what will he be facing next? "Giving up" on treatment for the pneumonia is not how I'd put it. I'd say it's a matter of getting the priorities right for your Dad.

Did you know that you can aspirate your own saliva, and that is full of organisms that are harmful in the lungs? There is no 100% sure way to prevent aspiration pneumonia. Just something to be aware of as you consider decisions.

I’m so sorry Karsten. I know it’s difficult to see your dad in such a condition and to feel so helpless to make it better.
Thanks for letting us know how its going. We are with you.

Karsten, I'm dealing with something quite similar to your father's condition, except that dementia isn't present. I'll share with you the advice from a very competent speech pathologist, and my understanding of the aspiration issues.

Your father probably has dysphagia, a swallowing disorder in which some food is aspirated directly into the lungs. He may be subconsciously pocketing his food in the pouches in his mouth. This isn't planned; it just happens because the food can't be swallowed as it would in someone w/o dysphagia. It ends up in the little pouches in the mouth, sometimes working its way down into the throat. The individual doesn't realize this is happening.

As food builds up and "pouches" in the throat, coughing starts as a reflex to clear the throat. One of the speech pathologists told us that coughing is helpful b/c it can clear the throat. However, if the throat can't be cleared, that complicates the aspiration issue. Is your father coughing a lot? It's a spontaneous response, but can be made strong by deliberately coughing.

When the thrush was in full onslaught, Dad couldn't cough everything up; that's when aspiration was the greatest threat, and when his face turned blue as his airway was compromised. This airway risk is one of the greatest challenges of dysphagia.

Suctioning can be used. The suction device is a long tube, a little bigger in diameter than a straw. Placed in the back of the mouth, it suctions out the throat to clear what can't be cleared by coughing.

My father also is dealing with aspiration pneumonia, plus CHF, thrush and a UTI - quadruple whammy.

We've had discussions about his prospects and the alternatives. One is intubation and a PEG tube, by which he would be fed through a tube in his stomach. He would be completely NPO then - nothing by mouth, liquid nutrition through the stomach tube.

He's been through that and doesn't want it again. It's grueling to manage. I had to pour a can of nutrition into the tube every four hours, faithfully, and more at 1 am when I hooked him up to the pumping station. I wouldn't recommend it to anyone who doesn't have a good prospect of recovering from dysphagia.

How my father's asp. pneumonia was handled is different from what you're being told. He can still eat, less than about 1 tsp. at a time, in a 1:1 assist - someone has to be with him when he's eating to monitor for aspiration and airway blockage, which can cause cyanosis as it did with my father.

He can eat a variety of pureed foods, as he is now, including pudding, pureed chicken, veggies and more. He suctions himself when necessary.

So I would ask the nurses about suctioning, about eating more pureed foods with a 1 to 1 assist (someone sits with him and monitors his consumption).

Different hospitals and different speech pathologists might handle the aspiration issue differently, but it's worth inquiring as I think your father could eat more if he's monitored.

I would ask to speak with a speech pathologist to specifically question whether eating anything other than pudding would be "giving up" on curing the pneumonia. This doesn't sound right, based on what I've been told several times by the very competent speech pathologist. I assume he's on antibiotics?

Is he getting anything through an IV? If not, he's essentially not getting any nutrition, which isn't going to help him remain strong enough to battle the infection, even with the help of IV antibiotics.

I was asked to come to the hospital to provide the 1:1 assist with feeding 3 times a day; I advised the nurse there's no way I could spend all day, every day in a hospital. (Nor should I - I've already checked with family and friends medical personnel and they said that's the hospital's job to provide the 1:1 assist). If at home, I would have to do it, or hire someone in whom I had confidence to handle that task.

We've had discussions before on how to deal with the dysphagia. You can try to manage it with suction, 1:1 assist, all pureed foods and thickened liquids, or you can accept that it could create not only depression b/c of the deprivation of good food (not pureed yuck) but continue the risk of aspiration.

Choking on food is not a pleasant way to end one's life.

Or, you can accept a PEG tube and live without tasting anything except perhaps thickened liquids.

Or, you can literally ignore the deprivations and eat what you want, knowing that you're risking choking and airway blockage as well as death by aspiration pneumonia.

It's not a good choice either way. Thinking about how challenging this is, I think a massive coronary would be an easier way to end someone's life, not that we have any choice. But choking to death produces panic and intense anxiety - that's how I've felt when my airway began to close after eating food with MSG in it - before I realized how much of a reaction I would have.

I hope this helps put the issue in perspective for you. Unfortunately, there are no good and bad choices in this situation - just a choice of bad and worse choices.

You have my sympathy; this is a difficult condition to manage.

I forgot to add that I am so appreciative of the advice and shared experiences people have offered here. They are really helpful.

May not even be an issue anymore My dad is in the hospital and apparently they are getting rid of the pneumonia via antibiotics, but has oxygen hooked up to nose and these boxing type mitts on so he cannot rip out all the hoses and IV lines. He looks miserable and agitated. He cannot communicate, he grunts and tries to talk but cannot. My SIL thought he wanted pudding. They do give him his meds crushed up in pudding but that is the only food they give him for fear of aspiration so the poor guy is probably hungry. We of course are not able to do what he wants us to do, so he looks frustrated and tremoring . We asked the nurse if he could have so pudding and she said by doing that we would essentially be giving up on fighting the pneumonia, and that may be a valid choice, comfort versus cure, as he probably will end up getting pneumonia anyway. Just breaks my heart to watch him in apparently such agony. The nurse said it is very likely as a dementia patient he is not in the amount of agony he appears to be. I don't know. Maybe that is true at times or maybe she is just trying to make us feel good. We inquired about a feeding tube down the nose but they MD has to review that saying that option often is not appropriate for dementia patients. Even though its hard to watch, we would sit there all day if we thought our presence was comforting him, but he appears to be more riled up when we are there than otherwise, probably because he tries to beg for help which we cannot give.

It's hard to know how much time a LO has. My LO has declined so much. I am considering bringing her home for her final days. I think it could bring her peace, though, it's hard to say. I wonder if somehow she is waiting to return home in order to say goodbye. A lot of her challenging behavior has passed, so, I think I can care  for her in the home, but, still it's  a lot of work, even with outside help and hospice. I'm not underestimating how much work it would be. 

"But if he could have several months of relatively quality life in a nursing home, versus a few days at home, I would choose nursing home."

And that is the huge unknown, isn't it? Our bodies give out when they give out. Sometimes that is as medical professionals predict, but often it is not.

Theoretically at least, if Dad has hospice care at home or hospice care in a nursing home, the outcomes would be the same. There is no reason (in my mind) to assume one would give him a longer life span. Having "regular" care vs hospice care might make a difference in length of life, but quality of life might vary, too. For example, if a nursing home kept treating him for every bout of pneumonia he might live longer than if hospice just kept him comfortable through each bout. But would you want to extend your Dad's life just so he could keep having lung infections?

It must be extremely stressful to have to consider these decisions. Keep in mind your limitations, though. Dad is going to die when his body is ready to die. Yes, make the best decision you can, but realize you are not really in charge. Nothing you can do will change the outcome.

What if you brought in outside help for your mother to cope at home, instead of planning to be there yourself? What if you give mom respite when you come? She leaves the house to have lunch with friends, go to a movie, get a manicure, visit a museum -- anything to give her a break and also to minimize the impact of her neurotic behavior on you?

The very insightful book "Being Mortal" by atul gawande may help give you and your family new perspectives about end-of-live decisions.

CountryMouse has given you good advice: Be kind to each other.

Karsten, this is always a tough decision. How does your Mom feel about bringing Dad back home to their house? How many years was Mom your Dad's caregiver? Do you think she would be up to resuming that role?

If Dad died at home, would Mom always view that room as where the love of her life had passed? A lot depends on your Mom's age and energy level, and how she views death.

My parents were in their mid to late 90's. My Mom needed to live in long-term-care as a head injury from a fall caused late stage dementia. I kept Mom in long-term-care because I knew my Dad couldn't bare to see Mom in that condition 24/7 if she lived in home. It would have made him deeply depressed.

MyDad would visit the facility once a day with his caregiver, and the caregiver would help feed Mom her lunch. Mom wasn't the same person and she didn't recognize Dad. Dad believed in the circle of life so that helped him through her passing. Dad passed the following year while living in Assisted Living/Memory Care.

Here are the decision makers in order of priority:

1. Your father. Since we can assume that he is no longer able to express a meaningful preference, you have to consult a) any clear statements he made about his wishes when he was still well; and b) any obvious pluses or minuses each setting would have for his wellbeing as he is now. So: home - 24/7 access for family, familiar surroundings. Memory care - staff with specialist training in managing challenging behaviours. Nursing Home with hospice - staff with specialist training in high quality end-of-life care. And so on - do a pros and cons sheet for your available options.

2. Your mother. She is the primary caregiver. She needs and deserves her children's whole-hearted support.

3. The rest of you. As long as you are putting your parents' welfare first, your own feelings, and not to put too fine a point on it your convenience, do matter. This time is sad and hard for everyone, it's important for you all to be considerate of one another.

Based on what you say about your mother, then unless your parents' home can accommodate 24/7 support from either family members or professional aides I think perhaps you should give more weight to keeping the strain off her. This is not the time to be expecting more stoicism or self-sacrifice from her than you normally would.

I'm very sorry you're all facing this; and I also totally get how demoralising your friend's news must feel, coming just now. What she is going through is a nightmare. That doesn't make what you're going through any easier, though. Be as kind to everyone, including yourself, as you can.