Every caregiver of a person living with Alzheimer's, Lewy Body dementia, Parkinson's or any other related dementia faces this gut wrenching question -
Should I put my loved with dementia in a nursing home or memory care facility?
By Bob DeMarco
Alzheimer's Reading Room
We all face this gut wrenching decision. Most of us don't want to do it. But sometimes, it is the only decision, and only right decision.
There are a long list of reasons why you might have to place your loved one in a nursing home or long term care memory facility.
Let me start by making this clear - it is not your fault. It is not your fault that your loved one is living with dementia. I know from talking with caregivers that many blame themselves. They live with enormous stress, guilt, and often fall into a deep sadness or depression.
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No on can operate effectively under those conditions. The pressure of caring can cause sleep deprivation, disrupt eating, and cause patterns that are likely to get worse including poor physical health for the caregiver.
When this happens you really have no choice. It time for nursing home care for your loved. Don't blame yourself. Make the good and right decision for your loved one.
In addition, the kinds of issues I am describing above might make you resentful of your loved one. Don't blame them either - it is not their fault.
Here are some of the reasons that can cause the need for long term care in a memory care facility.
60 percent of Alzheimer's patients will wander. This can be life threatening to the person living with Alzheimer's. It is no well known but dementia patients can and do die while wandering.
It is very difficult to keep a person living with Alzheimer's from wandering. If you have to work or they are living at home alone then long term care because a real possibility and often the right alternative.
There is a reason why they keep the doors locked in most memory care facilities - they know Alzheimer's patients are going to wonder.
Problems with balance, falling and walking are common among dementia patients. This is especially true in the later stages of the disease.
One of the greatest caregivers I ever knew "had to bite the bullet" and place her husband in a memory care facility. She found this decision gut wrenching and heart breaking. However, she continued to care by visiting him and doing things with him each day.
Here is the background scenario. Her husband started falling all the time. He was a big man and she couldn't get him up all by herself. She had friends help her, she called 911 and they came and helped her. But it got to the point where it was happening almost daily.
She soon realized that he might fall and break his hip, or fall and hit his head and get a concussion or worse. She knew she had to bite the bullet. She did. It was the right thing to do.
Over time she realized how much safer it was for him to be in a memory care facility. She did not have to live with all the worries of what might happen if he were to have a "fatal fall". Her stress was greatly reduced. Her level of anxiety dropped. She felt better physically and mentally. This actually helped her to be a better caregiver.
You don't have to stop caring when your loved moves to a long term facility. In fact, you might be able to do it better.
3. Aggressive Behavior
Some Alzheimer's patients can become very aggressive. When this happens the behavior can become more than you can handle. When this happens and if the aggression can not be treated effectively it often calls for professional help. The kind of help that can be found in a memory care facility that is effective in handling this kind of patient.
Ask yourself this question - has my loved one become a danger to himself (herself), to me, to members of my family, or to relatives and friends?
Memory care might be the only option.
4. Sundowning Syndrome
A large fraction of dementia patients suffer from this syndrome. Quite often it can be dealt with and controlled; but, sometimes it cannot.
Like in the example above the patient can become very aggressive. This is one of the kinds of behaviors that can be very burdensome to caregivers. It can cause enormous stress and can lead to deep sadness and depression. If you can't handle it, you can't handle it. Don't blame yourself - consider long term care.
5. Escalating Health Care Needs
You can reach the point where the health care needs of a dementia patient are more than you can handle. By keeping your loved one at home are you in anyway endangering the person living with dementia?
Let's flip the coin. Are you the caregiver experiencing greater health care needs? Are you foregoing proper treatment because you don't have time for it. Or, you just don't have enough energy to take care of yourself? Are you feeling constant anxiety? Enormous stress? Well this can lead to strokes or heart disease or worse. You have to consider your own health. You won't be of any help to the person living with dementia if you can no longer take care of them in any way, shape, or form.
Over time dementia care patients frequently experience greater health care needs, including the need of real nursing care.
6. You Have No One to Help You
This is a real issue in Alzheimer's and dementia care. If you have no one to help you, or family and friends have abandoned you, you just might "burn out". The human body can only take so much. When you reach the point that you can no longer operate in the best interest of the person living with dementia, or in your own best interests, it is time to look at long term care as a "real alternative".
There is no Right or Wrong Way to Care
There is no right or wrong way to care. Let me make this clear to everyone. The simple fact that I was able to keep my mom at home until she went to Heaven does not make me a better caregiver than someone that chooses long term memory care for their loved one.
What it is all about is making the best decision you can. There are two parts to this equation - the person being cared for and the caregiver. You can not separate the needs of both.
If care in a long term care facility is the best solution, the only solution, or even if it is necessary for any reason - make the decision.
Okay now let me shout this one more time -
It is not your fault.
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Touch and Kindness in Dementia Care
Care of Dementia Patients
Alzheimer's Care, I Cannot Get a Minute for Myself
Alzheimer's Wandering Why it Happens and What to do
Alzheimer's Care Sitting in the Front Row
How to Get Answers To Your Questions About Alzheimer's and Dementia
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).
The Alzheimer's Reading Room contains more than 5,000 articles and has been published daily since July, 2009.
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Time Magazine's 100 most influential people in the world. Professor of Neurology and holder of the Joseph P. and Rose F. Kennedy Endowed Chair in Neurology at Harvard University.