"She didn't use the Life Alert button when she fell! What am I going to do if this happens again? I've used up all my days staying with her after the first hospitalization."
"Your mom did say she enjoyed 'camp' because she had a roommate to speak with and there was always activity around her she could watch. By 'camp,' I think she meant the skilled nursing facility."
"The what?"
"The temporary nursing home stay for rehab, right after the last hospitalization."
"Oh yeah, Mom talks about it sometimes."
"She told me she wishes she could go back to camp because she feels lonely staying at home all day by herself. It sounds like she spends most of her time sitting in a recliner and she feels scared every time she has to get up to use the bathroom because she is afraid of falling."
"I get that. But she doesn't have Medicaid, so she doesn't qualify for a provider. And I have to work. I told Mom this. I call her every lunch hour to check on her."
"Have you and your mom ever talked about her moving in to a nursing home long term?"
"No! I promised her years ago that I would never put her in a nursing home!"
Depending on work flexibility, insurance coverage, out of pocket costs, and availability, family members may be able to spend more time at home, hire home aides, install home care equipment, and obtain assistive devices to help them care for a loved one at home. At some point, even this extra help at home may not be enough for a family member to fully care for a loved one the way they would want their loved one to be cared for. This would be a good time to contact the loved one's primary care physician or local community resources such as the local Area Agency on Aging to request a a social worker or case manager referral. Medical social workers and case managers would be the experts in discussing various caregiving possibilities and facilities based upon a person's finances.
A son or daughter (or any other family member) may ask, "I don't want to say this out loud, but this is getting harder and harder. I've been considering a nursing home for Dad, and I feel like I'm letting him down. What do you think I should do?"
1. Clarify your and your loved one's goals.
What is most important to a loved one, and their family, may change over time as the person's physical health or medical illness changes (read Post 8: I Want the Best Possible Care for ME - Part 2 of 2).
"We want Dad to be independent enough to use the bathroom on his own. We're currently taking turns taking off from work to stay with him so we can assist him."
"We want Dad to be able to join the family in the living room and perhaps attend occasional family outings. He has to at least be able to weight bear (that is, be able to stand while holding onto someone or something without legs completely giving out) so he can help us transfer him from the bed to the wheelchair. I tried completely lifting him from the bed to carry him to the wheelchair, and it didn't go well. My back still hurts."
"We want Dad to not have to keep going to the hospital. He comes back more confused every time. I wonder if he received professional care - you know, with folks who know how to take care of bedbound people - if he would have a better chance of being able to stay out of the hospital."
Some of these goals could potentially be accomplished by family members cobbling together new work schedules so that they take turns staying home for parts of the day. A family member may decide to retire early to become a full time caregiver. Family members may decide to privately hire home aides. Sometimes people are financially eligible for home aide provider services covered by the state.
Some family members may find that home health physical therapy or occupational therapy exercises are able to get a loved one back to a level of mobility that makes it easier to continue caregiving at home. Patients and family members may discover help with the use of equipment such as baby monitors, installed security video system, Life Alert button, hospital bed, hoyer lift, bedside commode, shower bench, installed shower grab bars, grabber or reacher, wheelchair, walker, or outside ramp.
If goals are not being achieved despite everyone's efforts, flexibility, and creativity, this may be the time to assess if a change in environment with day and night physical support - such as a move into a nursing home - may be necessary. This is when talking with a social worker or case manager (at the hospital, rehab, senior center, or primary care physician's office) could be especially helpful. Most palliative care teams (read Post 1: What Exactly Does a Palliative Care Specialist Do?) also have their own social worker to assist with finding the best possible caregiving solutions. "What's most important to me is to regain my close relationship with my dad. I feel like I'm anxious all the time trying to figure out how to be his nurse, his aide, and his therapist. Sometimes I feel overwhelmed and I snap at him, which makes me feel awful. I just want to go back to being his daughter."
If goals are not being achieved despite everyone's efforts, this may also be the time to reassess if those goals are realistic and even achievable. "We tried physical therapy to improve his balance, but he still falls. Twice we've had to catch him from falling completely to the floor, even when he was using his walker. I live in Houston, and I can fly in every 3 months to take him to his appointments, but I can't stay more than ten days. At some point, trying to maintain his independence at home will only result in his getting hurt and possibly losing all independence and choice. I want him to be safe while ensuring he maintains a say in his future for as long as possible. I don't think keeping him at home is going to get that for us anymore. I don't know if that means we move him into our home, my sister's home, an adult foster home, or a nursing home, but I do know that he'll have to change his definition of independence."
2. List the facts.
Articulate the reality of the situation as it stands right now.
"He's really strong, and he's really healthy! He used to be able to walk a mile to the park on his own."
"He sounds like a person who used to be fit and active."
"Yes."
"Sounds like things have changed a lot. I saw he needed to hold on to you when he stood up from the chair to go to the bathroom."
"Yes, things are very different now. Dad needs someone in the room with him at all times because sometimes his knees buckle, and we have to be there to catch him."
Articulate your reality, not someone else's.
"I don't know how to engage him. He comes to the table, eats, then sits on the couch to watch TV all day. Then about a month ago, he started requiring more and more help just to shower and get dressed. That's just too much for me! I know there are other 82 year olds, for example one at church, who have a lot of energy. So I know it's possible for him to be more independent."
"Everyone's situation is unique -"
"Yes, I know. If he could just interact more and tell me what he's thinking, if he could just practice walking more, being less...I don't want to say 'lazy'...but just try more, I think I could keep him at home."
Each person has their own set of medical issues and health abilities. They have their unique personal goals and values. The support at home may differ significantly from person to person. Someone's father with frequent falls may be living on his own, and another father with frequent falls may be living with a spouse and grown grandchild. Differences in finances and insurance coverage could result in very different sets of help at home.
What are the facts of YOUR situation, your CURRENT situation?
3. Determine if your loved one is mentally or emotionally able to be part of the decision making.
While considering the nursing home option for a loved one, determine first if they are currently able to engage in detailed deliberations (read Post 10: Four Simple Questions to Determine if a Person is of Sound Mind). Is your loved one giving deliberate thought to their situation? Or are they automatically repeating statements, "Don't put me in a home!" without being able to discuss potential consequences of remaining at home versus moving into a nursing home?
"I asked if he wanted to go to a nursing home or stay home, and he told me, 'Stay home. There's nothing wrong with me.'"
"I would think most people would reply that they want to stay home. Do you think he understands the potential dangers of staying at home?"
"No, no he doesn't."
"So you take into account his wishes. But ultimately you would have to make the final decisions for him. It would be unfair to him to have him make final decisions about his health and safety if he doesn't understand everything that is going on. That would be like giving him the keys to the car because he says he can drive even though you know he's already crashed the car once and gotten lost twice trying to find his way home."
If a loved one no longer has capacity to engage in big picture discussions, their family members - hopefully there is a medical power of attorney [read Post 4: Eleven Common Myths about the Medical Power of Attorney (MPOA)] - would have to accept that they would be the ones to make big picture decisions. Their loved one may still be able to give input and state a preference, however they may not be able to make final decisions.
Sometimes a loved one does have capacity to make decisions and is primarily in denial about the reality of the situation.
"I've lived in this home for forty years. I can still walk; I can still bathe myself; I can still dress myself."
"Dad, you say you can bathe yourself, but when's the last time you bathed? Last month? You say you can dress yourself, but you're always in boxers and a robe."
"I can still do it myself. I don't need a nursing home."
A loved one in denial will not give "permission" to be placed in a nursing home. The best a family member can do to be supportive is to repeatedly attempt to mindfully bring up their worries about their loved one's current medical, health, and living situations with the hope that one day, their loved one will be more open to talking (read Post 33: Seven Ways to Approach a Person in Denial). Until then, the family member may have to set boundaries and assist as much as they can physically and emotionally assist without their caregiving negatively affecting their own physical and emotional health, the rest of the family's health, , and their work health.
It can be emotionally difficult to seriously consider nursing home placement when our loved ones have not expressed "permission" to proceed with the move. It can be especially frustrating when a loved one adamantly refuses to leave their home. A family member may feel overwhelmed, frustrated, and helpless if they are told that their loved one does have mental capacity to make decisions for themself and witness this same loved one making "bad decisions," decisions that could potentially lead to harm.
It may be like watching your loved one with chronic obstructive pulmonary disease (COPD, a lung disease where excess inflammation and mucous production cause blockage of the airways) continue to smoke a pack a day or your loved one already hospitalized for complications related to uncontrolled diabetes continuing to eat a diet of bread, pasta, and sweets.
Unfortunately, some people may not be able to accept that they can no longer safely live on their own in their home until their physical abilities have changed so much that they are then affected with day to day self care. "He fell and broke his hip. He literally cannot get up on his own. That's how he ended up in the nursing home."
Occasionally invoking the help of a trusted healthcare provider can help a loved one realize how dire their current living situation is. "His doctor ordered 24/7 supervision, so he said, 'Okay.'"
Sometimes family members share their hopes that their loved one will eventually be able to accept a move to a nursing home and not be so angry or unhappy.
"What makes her happy?" I ask.
"Nothing," the son replies, "My mother is never happy about anything. That's how she's been her whole life."
If a loved one has a tendency to see the negative side of situations as part of their personality, a move to a nursing home will likely not change this aspect of their personality. Complaints about living at home may evolve into complaints about living in a nursing home. In this case, family members may need to accept that their loved one may not ever express contentment with making a move into a nursing home.
4. Address the specific worries you or your loved one might have.
When a loved one says, "Promise me you'll never put me in a home," what are they really asking? What are their fears, worries, and concerns?
If a loved one is saying, "I don't want to be abandoned and discarded," make concrete plans for regular visits, and possibly outings, with family and close friends.
If a loved one is saying, "I don't want to be neglected and sit in soiled clothes for hours," visit multiple nursing homes and ask questions you might have about their staff numbers, patient engagement activities, the protocol for bringing up future concerns, or specifics about day to day care. Reassure your loved one that you will remain a strong advocate for their care, whether they are living at home or in a nursing home.
If a loved one is saying, "I don't want to lose my freedom and independence," ascertain specifically what represents freedom to your loved one. Is it that they will have to sell their truck, though they haven't been able to drive for six months? Is it that they will have to eat someone else's food because they are used to eating takeout every day? Is it that they fear they will not have their own room and privacy?
Many specific concerns can be addressed, though sometimes solutions may require creative thinking or heart to heart discussions about the reality of a situation. "Dad, I know the truck means a lot to you. I can keep the truck in our driveway for now, and you can see it every time I bring you home to visit us. Later on, we'll have to talk about what we're going to do with it, but I can keep it at my place for now."
Visiting facilities ahead of time, not in a time of crisis, may allow family members more time to differentiate among facilities based on factors such as proximity to family members, ambiance of the nursing home, and group activities or extra services such as a beauty shop.
The more information you and your loved one obtain ahead of time, the more likely misperceptions can be clarified and worries assuaged.
5. If your loved one has declined significantly - in activity (read Post 24: A Cloudy Crystal Ball - Predictors of Prognosis Part 1 of 3), weight (read Post 26: A Cloudy Crystal Ball - Predictors of Prognosis Part 2 of 3), and/or alertness (read Post 28: A Cloudy Crystal Ball - Predictors of Prognosis Part 3 of 3) - and attempting to make clinic appointments and going to the hospital are more burdensome than helpful, know that more home options may open up, specifically that of hospice medical support at home (read Post 2: Five Major Ways Palliative Care Differs from Hospice).
"We don't want him to be hospitalized again."
"That's understandable. He's been through a lot. In the future, say tomorrow night, if he looked really ill, do you think he would want to go the emergency room to get labs and xrays and tests done to figure out what's wrong? Or do you think he would want to stay home and have medical care focused solely on reducing uncomfortable symptoms - such as oxygen, fan, breathing treatments, steroids, oral antibiotics, and/or morphine for severe shortness of breath - brought to the home?"
"Oh, we would definitely want him to stay home."
"The experts in keeping patients comfortable at home are hospice support at home. The hospice team would try their best to maintain someone's comfort, dignity, and peace. Sometimes a person improves from a bad episode and they continue to live. Sometimes it is a person's time and they die at home. The hospice team would support a patient and their family either way. Does hospice sound like a program that would be most in line with your goals?"
"Yes! Based on what you said, hospice would make the most sense now. We want Dad to stay home, where he can be with family. We can use all the help we can get to make that happen."
Consider if hospice support at home would be a potential path for helping you and your loved one accomplish what is most important to both of you. "He wants to focus on living his best life with family, without a schedule filled with doctor appointments, until it's his time. He wants to die at home. He doesn't want to die alone in a hospital."
If so, meet with different hospice agencies and hear what they have to offer to help you and your loved one accomplish your goals. You can call local hospice agencies yourself without having to go through a primary care physician. Just as a particular primary care physician may be a good fit for an individual, so a particular hospice agency may feel like a better fit than another.
6. Remind yourself that no decision or support path has to be final.
"I promised Mom that Dad would always be taken care of in a calm, safe environment. I thought for years that that meant keeping him at home, but I was struggling to give Dad the type of care I had promised Mom."
"So what do you think now?"
"I realized recently that placing him in a good nursing home near our house where I could visit him every day - and focus on just being his son and help him reorganize his baseball card collection, which makes him happy - is how I could best keep my promise."
No decision, whether it be to keep a loved one home, to place them in a nursing home, to accept hospice support, or to turn down hospice support, has to be final. As goals change, or as the reality of a situation changes, so too decisions can be reversed or another path taken. "My sister moved back into town, and she said she could help me with caring for our dad. We worked out a schedule, and we asked Dad what he preferred. He said he wanted to return home, so we took him out of the nursing home."
Making the difficult decision to transition a loved one into a nursing home may involve strong emotions such as sorrow, grief, guilt, relief (plus guilt over feeling relief), and disappointment in self. This would be the time to remind yourself of the goals that you and your loved one are hoping to achieve and that at this time, the move to a nursing home would be the best way to achieve those goals.
Negative emotions may become even more intense with second guessing, especially if a loved one declines further. Remember we can only make the best decisions we can with the information we have at the time we make a choice (read Post 16: Medical Decision Making 101). No one can gaze into the future and give definitive answers on how a loved one will do in a particular setting. Know that sometimes a loved one will decline regardless of where they are because their illness or disease is continuously worsening. If a loved one declines at home or in a nursing home, that is more information you have to determine if you are going to stick with the current path or choose another path.
I hope this step by step approach with big picture perspectives is helpful in thinking through these difficult, often emotionally charged, decisions.