Will You Be Prepared?
It's never too soon to begin
Alzheimer's and dementia often seem to be learn-as-you-go diseases. Both can sneak up on you, going from what you think is just the forgetfulness that comes with aging, to the realization that your loved one cannot live safely on their own. It's not an easy disease to plan out since every person who suffers from it will do so in their own way and time. Some don't live very long with it. Others may live with it for fifteen to twenty years.
What you can do is be prepared for the eventuality, and it isn't too soon to start right now. Even young adults can--and should--have conversations with their parents about the 'what if' of illness, whether it be Alzheimer's or another debilitating disease. Most of us have heard of the importance of living wills and the like. So too should you plan ahead for possible illness.
We were fortunate that our father was concerned about what would happen to mom if he died before her. This started years before she was diagnosed. So he was already predisposed to consider assisted living if and when necessary. It took several years for him to get there though--another reason to discuss it early. That was such a major decision on his part, but there are many other things to consider as well.
Baby boomers are now reaching retirement age. Reports say that the numbers with Alzheimer's and dementia are going to increase drastically as they age. While many are unwilling to face the subject of aging and death, it's more important than ever to consider now what may be needed later. Below is a list of several lessons we've learned over the years. Many I wish we knew at the beginning, when it seemed we still had so much time. The gradualness of the disease makes you less aware of the urgency. Hopefully you and your families can benefit from what we know now.
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Lessons Learned in the Beginning
1st Priority: Talk to your family
Have this discussion with your parents and/or your spouse (your children even) ahead of time, before dementia begins if possible. In addition to a health directive, it is wise to have a durable power of attorney prepared. Each state may have different requirements that your doctors office should be able to provide. If not your doctor, most cities or counties have a social services office you can connect with to learn what you may need. I believe legal permission is required by any doctor’s office, insurance company, pharmacy, bank, etc., before they should discuss your parent’s care with you.
Visit Several Assisted Living Facilities
Get the feel of them, see all they offer
If you look now, it gives your loved ones time to adjust to the idea of a residence. It wasn’t something our parents wanted when they first looked, but when they realized they needed more care they knew which they liked best. If both of your parents are living, encourage them to consider their spouse may be the one who needs additional care. It was Dad’s concern about Mom that made him more inclined to make the move to Assisted Living.
Don't Assume You Can't Afford It
Check into it early
The facilities will have knowledge of programs in your state that may offer financial help, between social security, PACE (Program for All-Inclusive Care for the Elderly) medicare/medicaid, and the VA (even for a surviving spouse). You might find your parent or spouse is eligible for a variety of programs. Perhaps it still won’t seem feasible to you, but you won’t know until you ask. When you ask, you’ll be given guidelines as well as people to call with questions. Everyone I spoke with regarding Mom and Dad’s care, was extremely helpful, offering plenty of suggestions and advice.
You will find that not all facilities accept medicaid and that there may be a waiting list for medicaid patients. Another consideration for those places that accept the state funding; if you move in while able to pay, they often have plans that will guarantee staying when funds run out. That would be something you would need to check at individual facilities. The main thing is to check into it ahead of time so you know what is available and what rules apply.
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Be Sure the Caregiver Gets a Break
Even early on, it's important to have time away
Even little things can get bothersome after a time. Dad would sometimes find it frustrating when mom couldn’t comprehend what he was saying. Even asking for a tissue might cause stress because she couldn’t think what it was. Then she would get upset. Living with a loved one who has Alzheimer’s/dementia IS frustrating at times, especially when it is a constant. It’s important for that caregiver to get away, to have some other stimulation.
If you are early on in the process, remember, it is much easier to go with the flow, acknowledge for the sixth or seventh time that, yes, the yellow flowers are lovely. Bless their hearts, they won’t realize they are repeating themselves, but if it stresses you out it is liable to stress them too.
Are Your Parents Safe?
Look around their home
If you look around their home, inside and out, try and consider it from a safety standpoint. It takes a different perspective, but you may run across things that are easily fixed. One example, a tea pot that whistles will often eliminate its being forgotten on a hot stove.
Ask Questions Now
While they can still answer
If you have questions for them, ask them now! Every day we seem to come up with new questions about their histories, but mom is unable to tell us now. Go through their photo albums with them, asking them who each person is. Get the grandchildren involved. Try to come up with questions about their pasts. Come up with silly questions. Have fun with it and write down the answers! You can fill out a book too–so many options available. There is so much you may wish you remembered later.
Knowing your genealogy may or may not be important to you, though it would seem wise to have some basic knowledge assembled, including health histories. The thing we wonder about now are fun things. When I look around the memory care residence when Mom lives now, I wonder about each of their pasts. What made them smile, what they liked to do, who their friends were and why. It is reassuring when you see them in this new state to know they lived.
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Prepare for the Future
Give yourselves time to get used to the idea
Last but not least, if you have a loved one with Alzheimer’s or dementia, please give serious thought to ‘when.’ At some point it is likely that your parent(s) or spouse will be better off IN a facility. The care needed may become more than a caregiver is able to handle alone. And the afflicted one may find the companionship and 24/7 care available comforting and stabilizing.
In the meantime, you might consider what care will be available, who will provide it, and how it can be divided. Making it a family affair can lessen the burden on the primary caregiver. That person may need all the help you can give.