I have heard a frequent phrase throughout my decades working with seniors - I Promised Not to Put My Parents in a Nursing HomeAngil Tarach
+Alzheimer's Reading Room
The decision to keep a parent home or place them in a facility is never an easy choice, and is usually contemplated for a long time. The horror stories we’ve all heard about nursing homes can make anyone cringe.
So how do you decide what is best for you loved one, especially when a parent has Alzheimer’s or dementia?
Many things must be taken into consideration. First and foremost, will you be able to safely provide care? Bob DeMarco made this choice, and when he did, he left his job to take care of his Mom full time. That is a luxury many are unable to do for financial reasons.
So when you have no choice but to remain working, how do you care for parent with Alzheimer’s?
If you have another family member or friend able to stay with your parent while you are at work, this would be the most desirable choice.
If you don’t, can you afford to pay for a private duty homecare agency to provide care while you are at work? Is there a memory care day program in your area? Can you divide the time for care between family, friends, private duty, and a memory care program? Your financial ability to pay for care is often taken into consideration.
To get more information about financial resources, you can read my series -- Who Pays for What?
Having someone with your parent who has Alzheimer’s while you are away from home is a necessity, especially as the disease progresses. I have met with families that call for homecare after some horrible incident has happened when they have left their parent home alone. You don't want this to happen to you.
I have also met families who refrain from full time help because they are letting their parent with dementia guide the care. Meaning, they know their parent is resistant, so they want to start slowly, or see how it goes. One of the worst things an adult child of a parent with dementia can do is risk the safety of their parent.
Safety is the #1 consideration when deciding whether to care for a parent at home or decide to place them in a facility.
The repercussions of leaving a person alone with moderate to advanced dementia can be tragic. Falls, wandering, using a stove alone, can all lead to regrettable consequences. If you have no resources to provide 24 hour supervised care for your parent, placement in a facility may be a better choice.
I sometimes leave homes crying because of the living conditions I have observed.
One woman I will never forget lived alone. Her son had a lot on his plate. A job, caring for his grandkids, because his daughter was beaten so badly she could no longer care for her children, caring for his daughter, and his elderly mother.
This man did not want to put his mother in a nursing home. She was immobile without assistance, incontinent, and had early dementia. I was a visiting nurse at the time, and there were days I would visit and find his mother on a urine soaked couch late in the day because he was unable to attend to her until came home from work.
This woman was clearly at risk for a number of tragedies and I urged him to place her in a facility. I ended up having to call adult protective services because his promise to never put her in a nursing home out-weighed his common sense.
This is just one story.
Do you see when placing a loved one would be the only choice for their well being, and safety? Don’t keep a parent home because you promised not to place them, when they are not cared for in a safe and loving manner.
You also want to consider the care you can provide even when a parent will be supervised 24 hours. Are you patient, and loving when a parent repeats the same questions over and over. If you catch yourself saying I just told you, then you do not understand the disease, or have the patience to care for your parent.
Sometimes it’s just a matter of educating yourself on the disease, and being able to put yourself in their shoes. To understand they think it’s the first time when they are saying the same thing for the tenth time; so you need to react and answer like it’s the first time. I understand that is difficult to do. Nevertheless, its necesary.
You will need to get good at redirection. Redirecting someone who is fixated on the same thing can do wonders. Trying to understand if there is an underlying need that needs to be addressed is also necessary, especially if anger is involved.
It will be very important to educate yourself on communication techniques to lessen the stress, and avoid abuse.
My Visiting Angels agency trains our caregivers with an excellent video from Medifecta called How to Communicate with Someone Who Has Alzheimer’s Disease.
Many caregiver’s have thanked us after going through this training because their understanding and ability to communicate with Alzheimer’s sufferers has improves dramatically.
The video is a bit expensive but is worth its weight in gold when you care for a parent or spouse with dementia.
You can find the video, and others materials related to Alzheimer’s and caregiving here.
The American Red Cross has a program that we use for training called the Family Caregiver Program. This video has 9 modules, including Alzheimer’s and Dementia which is more cost effective. My agency uses them both in combination, but we have found the Medifecta training to be more in depth. To find the Red Cross video go to the Red Cross store.
If you choose to keep your loved one home safely, and with loving care, it will be important to educate yourself, and realize you can’t do it alone.
You will need a physician who has expertise in Alzheimer’s and Dementia, and understands the needs of Alzheimer's patients. He or she needs an understanding of your role, and responsibilities.
You will need respite. Caregiver’s must take care of themselves so they can care for a loved one. You'll need time away to sort out feelings and recharge.
Prepare to enjoy the journey. You can develop a special and loving bond that wouldn’t be possible otherwise. Even if you know your spouse or parent will forget in 5 minutes, don’t negate the moments.
Facilities that specialize in memory care or have a dedicated wing for memory care can be very nice, so if placement is the right choice for your family, investigate them thoroughly before choosing. You can read my article Investigating Nursing Home Options. This article will help you as you choose a facility.
Guilt is a common emotion when placing a parent or spouse in a long term care facility. This is a wasted emotion when you have chosen placement for the best possible quality of life for your loved one. Every family has a unique set of circumstances and situation.
The answer to care is the best solution for your family. Find supportive family members and friends, no matter what the care choice you make.
If you feel alone, find a support group to meet others affected by Alzheimer’s. You can find groups in your community or online.
Realize you will have good days and bad. Treasure the good, and use your resources on the bad.
Last, remember to take care of yourself.
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