If you are wondering when is the right time, you are in good company.
I want you to know there is no “right” time or reason to move your person.
It is going to depend on the person and your unique situation.
Some common reasons for a move are concern for the person’s safety, need for nursing care, and behaviors which are not possible to manage at home.
Your own physical health may be the reason.
You need to take care of your body. I can not tell you how many caregivers I have seen as patients in the ER because they have neglected themselves for too long.
Perhaps your mental health is taking a toll. You may be sacrificing your own future or relationships to your own detriment. It may be unsustainable for you to continue on the way you have been.
You matter too!
There are a million reasons why it might be appropriate to have your person move into a facility.
I want to stress that you are not a bad person or failing your person if you can not keep them in their or your home.
It is absolutely ok to move someone into a residential facility if that is what is best for them AND you!
If your goal is to keep your person at home, that is wonderful.
I do want you to be honest with yourself and realistic. I see people making promises about keeping their person at home causing multiple downstream repercussions.
Family fights, lack of self care on part of the caregiver, mental and physical health crises for caregivers come to the top of my mind.
If the goal is to stay home I recommend you set boundaries.
Think of conditions now, ahead of time, in which it would not be safe for you, or your person, to remain home.
There are always exceptions to consider. See if you can discuss this with your person before they lose the ability to.
Name the reasons why you might have to place them.
Ask for permission to do so.
If your person can not discuss this with you, talk about it with family and whoever else may be helping you make decisions.
Having that verbal “Yes, I understand. That would be OK” ahead of time will do you a world of good.
One such situation you should discuss ahead of time is your own physical safety.
Say your person were to become verbally aggressive or even physically aggressive.
Consider the threat to yourself or to them as an exception for finding a new living situation.
You can pay attention and search for underlying causes and triggers, implement strategies you learn, change something in their environment, change your own behavior, or even consider use of medications.
You can try all kinds of interventions, but this is a real potential for every caregiver. Get permission to consider a new living situation if this happens to you despite your best efforts.
At the start of noticing such behavior, start looking into facilities and what is available.
If it does not escalate or resolves due to your interventions, great, but if it doesn’t you will have places you can turn to.
You will know things you did not previously after researching and you won’t have as big of a crisis in trying to move your person.
I have seen plenty of caregivers physically injured as the reason why their person was placed in a facility.
I have heard of cases in which guardianship was sought by another family member due to physical harm of the primary caregiver after they promised not to move their person.
A trend of physical aggression and high likelihood of harm to a caregiver or the person living with dementia is an extremely appropriate exception to the goal to keep someone home.
In having these talks, in naming reasons why this goal may not be able to be honored, the intention is to plan for the worst and hope for the best.
Write down the exceptions for why it would be OK and appropriate to abandon the goal of staying home.
What you do ahead of time could make a move which goes against the original plan, much less stressful.
Do not beat yourself up if the exception to the goal happens. You planned for it. You knew it was a possibility and you did what you could to honor their wishes.
A diagnosis of a disease causing dementia warrants this type of planning ahead.
The symptoms of dementia will progress over time. Knowing your person has dementia allows you to learn what might happen in the future.
Educate yourself about the stages of dementia. About the type of care people commonly need in each stage.
I highly recommend Vicky Noland Fitch’s YouTube Channel Dementia with Grace for this education.
I want you to learn so you can anticipate your person’s future care needs. Consider whether or not you feel you can care for them when they have more severe symptoms.
Pay special attention to patterns you notice over time.
Take note of the issues you are having caring for your person. Write them down. Reviewing that written list regularly will help you see if a pattern is forming.
If there is a pattern towards the need of more care or supervision, unless there is a new medical issue as the root cause, it is likely to become a permanent need.
If you are thinking to yourself, “I don’t know how much longer I can do this,” trust your gut.
It may be signaling a need for change.
I find the most common mistake when it comes to transitioning someone, is waiting until your hand is forced.
From my perspective working in the ER, a hospitalization commonly sets off a chain of events ending in a permanent move.
Let’s discuss a real world example.
Say your person has a UTI or pneumonia and becomes very weak. They may have to stay in the hospital rather than go home. Often it is not because of severe infection, but because of how physically run down they are.
While in the hospital they will be labeled, appropriately so, a “fall risk”, able to get up only with help. The more people it requires to help them, will likely mean more time in bed.
Even with physical therapy and staff helping them to a chair for meals, they may not regain their strength in the hospital.
People used to stay in the hospital for weeks. Now they are staying in for days.
If they are in the hospital for a few days and not worsening from an infection standpoint the medical team will be thinking about next steps.
The medical team, social workers, and you, will need to think about where they are safe to go now.
There are only a few options. Rehab, home (where they were before), staying with another family member, or moving into a residential facility.
From this point I often see people go home or with family when they in hindsight should not have.
They come back to the ER for so many reasons I will not list them out here.
Often it’s not because of the issue that put them in the hospital in the first place.
More often they come back due to inability to be cared for. They need more assistance than what was realized due to their overall functional abilities worsening.
Their dementia symptoms becoming worse is very common. This can impact the way they think and act (cognitive functioning) and what they are physically able to do.
To be fair the same happens at rehabilitation facilities. I see patients discharged from rehab coming back into the ER as well. Having a history of dementia makes this more likely.
Hospitalizations are a big deal for the person with dementia.
After a hospital and rehabilitation stay your person may not return to their previous level of functioning.
If they can not live where they were before you may be scrambling to find a permanent residential facility.
You will likely not be able to control your person’s eventual need for the hospital.
At some point they will need to come in and stay if that is within their goals of care.
You also do not have control over when this happens. (There will be clues you can look out for which is part of what I teach in my course.)
One thing you can control is researching and knowing the option which would be best for them if they can not come home.
Increasing hospital visits are common for us as we age, but in the person with dementia they can be a sign of worsening disease and a red flag.
If your person has been admitted to (stayed overnight) the hospital more than once in the last 6 months you need to pay attention.
Do not wait to find a good facility for your person when you are in crisis mode with a new medical problem and a stay in the hospital.
I want you to learn about the rehabilitation facilities and their reputation ahead of time. If there is a choice in the facility from the hospital, you’ll feel better with what is happening by having done your homework.
Remember, I teach planning for the worst and hoping for the best.
If your person has a need for a more permanent facility, before or after a hospital stay, you should feel good about where they are going to live.
The way you do this is by researching what is available ahead of time.
Do not wait. The minute you start wondering if it might be time for them to move in somewhere else, you might be behind.
It’s OK! Ask for help.
Ask the local area agency on aging for a list of facilities and a breakdown of who lives there. Ask who is the best for dementia care.
Consider cost. Think about your person’s financial plan for care. Compare the cost of having them home with 24 hour care versus the cost of a facility. Consider the cost to you mentally and physically as well.
Consulting with a financial advisor who specializes in planning for people who are aging and has experience in guiding families through a dementia journey may be worth the investment.
Lean on the support groups in your community or online. There is someone else near you going through the same thing.
Ask people about the reputation of the facilities you are interested in.
You should know there are good people who have created businesses which match people to facilities that are the best fit for them. “Senior living advisor”, “senior navigator”, “senior advisor”, “senior housing expert”, are terms you can search in google.
You’ll want to make sure the staff in the facilities you are considering are accustomed to providing assistance and care to dementia patients. You want them to have a deep understanding of dementia behaviors and have had training in how to approach residents.
You know the approach which is best for your person’s day to day care. The goal when doing your research is to find facilities you feel would provide this type of care to the best of their ability.
You may never have a need for a move for your person, but I can assure you it will only serve you to be prepared in case you do.
Come and join the Facebook community – Medical Decision Making for Your Loved One with Dementia to ask me questions about what to look for in a facility.
I have a lot of thoughts. Perhaps one day I’ll write an entire post about them.
Until then, all my best to you,
Brittany Lamb, MD
My mom has been living with us for a year now. It’s time for her to go and the family has found a good place. The home requires filling out a 602A form. I filled it out and sent it to membership services at Kaiser Permanente two weeks ago, as mom’s doctor instructed. Now, membership services says they don’t have it. What is the holdup? Do I need to do something more? The ALF is holding mom’s place. They only required that form and mom’s list of meds.
Hi Michelle, I can understand your frustration. I don’t know how to answer this for you. It seems like a systems issue. You need to talk with them about what else they need to keep her place. Keep sending messages, emails or calling if you need to until it is resolved.
My mom had mild dementia for probably 5-7 years. The first of August she declined rapidly. She cannot feed herself, walk or stand. She doesn’t talk much, if she does it is to the people in her reality. She hasn’t known me in weeks.
My plan was to keep her with me. The hallucinations, sleepless night, disagreeable behaviors, SO UNLIKE MY MOMMA , really got to me. My dad had dementia I thought I knew what was coming or could come. I was knowledgeable but putting that to use was not working. Depression, anxiety were taking hold of me. I couldn’t eat, couldn’t sleep.
Fortunately, my mom’s doctor recommended a hospice that has helped tremendously. I don’t feel so lost. We have meds where they need to be ( for now). I feel prepared for tonight, for tomorrow. My husband is a great help. My kids and other grandchildren are very supportive and help how they can.
I do know this may not work until she is gone. I feel I have done right by her to this point. If she has to be moved I believe I will have peace with that decision.
That is a lot to have happen so suddenly Christi. I am glad to hear you are finding hospice beneficial. It is an underused service for sure. There is so much stigma around it. You should have peace you are doing the very best you can in a tremendously difficult situation. Check out “hospice nurse Julie” on social media. She is wonderful to follow, so much education and good she is doing. All my best to you, your family, and your mom Christi.
You know the saying.you can’t really know how someone is feeling until you have walked a mile in my shoes. This past April we my brother and I found out that our Mom has mild Vascular dementia, but she came down with a UTI and I didn’t know until I took her to hospital emergency room. And when they found the UTI her therapist told me one morning because of the severity her dementia.had become moderate. Ànd after a long stay in hospital and because the hospital so ial worker didn’t have us try to get her signed up on Medicare. Instead tried to get her a nursing home for therapy treatment. But just a few days before they released her after they had promised us that she wouldn’t go back home but would be placed in a nursing home they come in and tell my brother that they couldn’t get her signed in to a nursing home unless we got her signed up and approved for Medicaid and told this on a Friday evening. So a few days later which my brother started paper work for Medicaid, I received the call to go pick her up and bring her back to her home. And if that wasn’t bad enough they said a nurse would come out to her place at least twice a week. But instead when they came and found out. I couldn’t stay with her 24/7. Even though I told them I was on disability myself didn’t matter at all. And my Brother had to go back home to where he lives in Mississippi. But after a couple weeks and me finding someone to help sit with her. He finally comes back to KY. And after he stays around the clock for a week with her, I get a call from a nursing home that we take her Medicaid Pending but this all happen on August 1, 2022 and just three weeks into her stay she came down with Covid, but I had kept her from it for two years by every winter getting her groceries and meds or anything else. I prayed to God that she would pull through Covid, but just a week ago she had to be taken to hospital again had a temp of 101 and was coughing a lot and was really sick. So they started her on strong Covid Meds also she had pneumonia. And just yesterday after two weeks of her being in her room only and this past Friday I finally got to see her
But can already see that she is not.remebering as well. And wasn’t taking care of herself again noticed she was it hing got nurse to get a CMA and help give her a shower where she had been wiping with adult cleaning pads but not rinsing off enough .So now her skin is dried and inflamed. I am going back Sunday and Monday see about talking to head administrator of nursing home. I think they are not getting it that she is so acceptable to getting these TMI and everytime she gets one her dementia gets worse…
I just hope they will start making sure she takes frequent showers and stays cleaner.
I hear you…this chain of events that has happened to your Mom is something I see every day in the ER. Despite even the best care by facilities or family caregivers at home, these things happen. Definitely keep advocating for your Mom. Anything that can be done to decrease infections will, as you mentioned, allow her a chance at recovery and a slower decline. Do keep in mind though that the conditions she has, including dementia, are the underlying root cause of her worsening overall. I wish you, your brother, your Mom, and the staff caring for her all the best.
Excellent article. Fortunately for me and spouse we had most of these ideas in place already when his health started to slip and dementia was just starting to kick in. A couple of years at home with myself giving homecare alone but the ground rules were in place. When the time came he could no longer stand and became totally incontinent the foundation to getting access to an excellent facility was in place. Just home from visiting, its not home but I can most nights come home and feel at peace over his move. The times I feel a bit down over it I take comfort in the fact now I am renewing my place as loving wife without many of the anxious moments.
Thank you for sharing part of your story here Sheila and for your feedback on my article. Happy to hear you have found some peace in his living situation. All my best to you and your husband.
We moved my mom to a care facility 4 weeks ago now. I have been her caregiver since my dad passed suddebly 3.5 years ago watching her decline which this year a lot has changed in her needs. I could no longer balance Mom, my job & husband. I am daily tortured about my choice knowing it was the right move & we made a good choice of facilities AND my mom weeping and asking to just come with me and live together. I feel very anxious about interacting with various people in my community circle. I feel like I’ve failed my mom. I don’t want my mom and her dementia experience to be a circus show for some. I don’t want mom to miss out on life because of her dementia but I realize that her experience looks different because of her dementia. And I’m terrified of being in her position in 20 years and I don’t have any kids with one who might take care and care about me as I could very well loose my mind and I’ll be all alone.
Hi Cathie, I appreciate you taking the time to leave a comment here. It will take some more time for sure to grow accustomed to the change. I want you to look into a podcast called “From One Caregiver to Another.” It’s by Kay Coughlin. She is a caregiver coach. I feel your concerns about your future as well. My husband and I are choosing not to have children and because of what I do in the ER I worry about our future care as well. You have become educated now and can document what is important to you and put a plan in place for yourself if it becomes needed. You’ll need a trusted medical POA. It doesn’t have to be a family member. A friend’s child…perhaps or a niece or nephew. There are also services you can hire as senior care managers who can serve as your medical POA (just so you are aware). Hugs to you!