It happens when your last nerve is broken, your body is hurting, your spirit is beyond exhaustion and you are pretty sure that you will be dying soon, very soon. And still the guilt demon in your head whispers to you, “Bad girl (bad boy). You promised to never do this. Till death do us part; or, all children must take care of Mom or Dad.”
What to do?
So with regret, you allow them to move out of the house. There, the decision is done! Or is it?
With some couples, or parents and children it is NOT done. Even if the person with dementia has physically moved out to a community, the person at home has not committed to the decision that they already made. They will take them out of the community for visits to the home often, sometimes every day, returning them in late afternoon or evening, or sometimes even bringing them back home permanently after a few weeks or months in the community.
The problem here is the guilt demon is silenced, but you are left with the same situation, or worse that caused you to move them to the “village” in the first place.
It all revolves around your COMMITMENT to the path you set out on when you agreed to have them move.
When they change residences you need to understand that you are setting them up in a new home. You want them to have the best life possible. Why else are you having them go to the “village”? Then you must allow them to integrate into that home. If you are doing it solely because you need a just a little bit of a break, then bring someone into the home for a number of hours, and you get out of the house, or have them go into “respite” (a short stay at a community to give you a break, say for a weekend, a week, two weeks). Don’t move them permanently.
When you make the COMMITMENT to move them permanently, that means that you are giving the “village” time to welcome them in, get them assimilated into the routines and the rhythms of that community, bond with the staff, and perhaps make friends with other residents.
One of the most important benefits of moving into a community is the socialization opportunities one gets from living with other people. Most times the person with dementia was isolated and bored in their home, even living with their spouse or children. No one person is able to keep them engaged all day every day. It’s unrealistic to expect anyone to be able to do that, ever. (Even Bob has Harvey to help).
You have a better chance of more engagement being in a community with more people available to engage with your loved one (i.e. staff and other residents). If you keep spiriting your loved one back home day in and day out, they never get the chance to adapt and adjust to their new home. Their stay there has no chance to be successful, no matter how top notch the place is.
Don’t do that to your loved one.
Give them the chance to become part of the community.
Communities often tell the families to not visit for a week or longer when they first move in. That’s simply to give the person a chance to become part of the community and become comfortable with their new life. After that, visit them every day, if you need to, but visit with them there. Take them out to eat, take them to the art gallery, to other places of interest but do not take them back home. It confuses them. They won’t know where they really live. It’s scary to them. It’s as if they were homeless. You wouldn’t want to feel that way, would you?
If it’s a bad place, or just the wrong place for your loved one, and they don’t do well, you can always move them, but give the place a chance (meaning at least three months) unless of course, there are signs of significant deterioration or abuse.
Conversely, if your loved one improves significantly, enough so that you say, I can care for them now, and want to bring them back home again, think again.
Is it possible that they got better because the place was able to provide things you couldn’t at home?
Many times the answer is yes. Things like socialization and engagement with others, trained aides to assist your loved one with the necessary activities of daily living like taking their medications, bathing regularly, eating nutritious foods and other things that you were not able to get accomplished with your loved one on a routine basis.
Persons with dementia have a tendency to cooperate more often with strangers or “professionals” simply because they want to be seen as good and compliant people to others, and mostly because they don’t feel comfortable with saying “no” to them. They sure feel comfortable saying no to you. They know that you have to love them anyways, after all you are family.
Know this, however. No matter what a community can do for your loved one, there is one thing that you do that they can never replace, no matter what. They cannot give them the love that you can. They are not their spouse or child.
They can never know all the secret things you know about the person that can make them happy. Those secret things come from years of knowledge, love, sharing, and intimacy; things like where to scratch their back, things like singing special songs to them from your shared past.
There is a world of difference between physical care and real (emotional) love. Physical care is NOT the only way you can show love. Remember this crucial fact. It will do you good to repeat it daily, hourly even, in the beginning.
So in conclusion, if you are going to move them -- move them in your head and in your heart. Truly allow the community to do what they do best, take care of your loved one physically.
You do what you do best, give them the love that they need emotionally.
Above all, move them for their sake, not for yours. And once you do that, tell yourself everyday that you are doing that because you love them and want the best quality of life for them. Those things said often enough inside your head, will quiet the beast of guilt down to a tolerable level.
is a Geriatric Care Manager who specializes in helping families with Alzheimer’s and related dementias issues. She also trains caregivers in home care companies, assisted livings, memory care communities, and nursing homes in dementia specific techniques for best care of dementia sufferers. ThirdAge Services LLC , is located in Dallas, TX.
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