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Will Alzheimer's or Dementia Affect Your Family?

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Woman Alone
Credit: Image courtesy of Wikipedia CC

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.

The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss
Amazon Price: $10.00 $5.29 Buy Now
(price as of Aug 26, 2014)
I always recommend this book to anyone coping with Alzheimer's in their family. The title certainly sums up how it can feel. The 36-Hour Day is probably the most popular book about Alzheimer's. Highly rated too.

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.

Even without dementia or Alzheimer’s it can become difficult for the aging to remember what a doctor suggests. It would be so helpful if one of their children is able to get the information as needed. A durable power of attorney permits that if they are unable to verbally permit it. That has come up at least a dozen times for me in the past two years. It takes a while to get everything filed to a bureaucracy’s satisfaction. Another reason to plan ahead.

Visit Several Assisted Living Facilities

Get the feel of them, see all they offer

Dad Dining
Have you been to any assisted living facilities? You might be surprised at how lovely and homey they can be. Beautiful, wide hallways, spacious rooms or apartments with some with full kitchens, fun and inviting community areas, and a calendar filled with a variety of events. Take a tour of a few of them.
If your parents resist, you can make it a visit to see someone there as an excuse, or stop in for lunch. Most facilities will invite you to have a meal there to see the ambiance. Once you’ve seen a few locations, it will at least be in your parents minds and you can talk about it occasionally. So many assisted living residences are beautiful and inviting. Many seniors think of nursing homes when they think of assisted living. While many nursing homes are very nice too, they are generally for temporary care after an illness or accident. They don’t reflect the lifestyle or the personalities that an assisted living facility usually contains.

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

This is so important, since many of our parents live on fixed incomes. Even if you/they don’t, the monthly costs for assisted living/memory care sound out of range for any length of time. Don’t assume that though. Check into it first. If you speak to the directors of any facility, you will find them more than willing to go over the many options they have–even for assisted living. I believe with Alzheimer’s and dementia there is additional funding available in many if not most states, since additional caregiving is required.

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.
Alzheimer's For Dummies
Amazon Price: Buy Now
(price as of Aug 26, 2014)
I'm not intending any disrespect here. When you've dealt with Alzheimer's for as many years as my family has, you find humor is a big part of getting through it. The Dummies books can be counted on for lighter moments right along side solid facts. It's easy to read, well divided, and an excellent resource.

Be Sure the Caregiver Gets a Break

Even early on, it's important to have time away

If you’ve ever provided care for another, even briefly, you know it can be tiring. Depending on the needs of the individual it can go straight to exhausting. Not only physically where lifting, shifting and moving someone can take great strength, but mentally and emotionally as well. Make sure the primary caregiver gets a break from it. If you are the caregiver, ask family to fill in. If family isn’t available there are services that provide someone to watch over your loved one while you take a break. Don’t try to do it all alone.

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

Sweet Lady M
Housekeeping issues are another consideration for any aging parent. Please check your parent’s home for safety! I’ve heard of a variety of issues that come up, from leaving the stove on and smoking up the entire house to food gone bad in the refrigerator. At some point you have to set aside some of the reticence that might make you feel you shouldn’t do this, and clean out their fridge. Most in that generation were raised not to be wasteful. Please check for old/bad food when you visit. The thought of them using sour milk or dated lunchmeat can be very eye-opening.
Check medications as well! If you are able it might help to go through and verify the dates on the medication they are taking. Are they still able to use oldest first? Are they correctly taking what they should? The daily pill containers help immensely, though at some point with Alzheimer’s and dementia, they will no longer be able to distinguish which pills to take, let alone when they should be taken.

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.

Creating Moments of Joy for the Person with Alzheimer's or Dementia: A Journal for Caregivers, Fourth Edition
Amazon Price: $24.95 $15.82 Buy Now
(price as of Aug 26, 2014)
While I haven't read this yet, it is in my wish list. Highly recommended as a book that will offer you realistic tips and solutions to many of the behaviors that come with Alzheimer's. Stories that sadden interspersed with others that will make you laugh out loud. Laughter is so important with this disease.

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.

The sooner you realize it may be necessary, the more often it is brought up, the easier it will be to step forward with it. Many feel guilty at this, but I hope you can move past that. It may be of great benefit to your loved one.

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.


Oct 11, 2014 6:15pm
Very helpful article. And yes I think we need to be prepared for this as it is affecting more and more families. And it is affecting younger people too which is scary. I do feel sorry for the carers and they definitely do need help. Both mental and physical relief as it is a big strain on their own and their families lives.
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