Care Options for Alzheimer's Loved Ones

Don't Make the Promise if You Haven't Already Done So

If you haven't made the fateful promise, but your parents want you to do so, simply say, "I love you very much and will do everything I can to take care of you. We don't know what the future holds, but I'll do my best, always, to care for you in the best way I can." Repeat as needed.

Back to Options

The first place I recommend people check for help is their state website. Since each state is different, it's hard to give one answer as to what help is available in your community. By going to your state Web site (just type in the state name and scroll down until you find the official site), you should find some help. If you type "aging" into the search box of your state site, you'll find your state's version of the National Family Caregiver Support Program (NFCSP). Click that link and check in with these people. They will know what your state and community have available. They will also offer emotional support.

Many states have some federally funded hours of in-home care that go to waste because people don't know about them. The NFCSP folks should be able to point you to the organization in your area that would administer this help.

Click on any site that looks useful under this state aging help category. You may find quite a lot of help – or not much.

In-home care agency care can be expensive, but it's flexible. You may find an agency that can help your loved one, at least for awhile so you have a break from constant care, and then you can look for more permanent help. The main idea is that you need to get some relief.

Assisted living centers often have memory units, which generally offer good care to folks with dementia who are not having a lot of other physical problems. Assisted living is expensive. Expect that most of your elder's money will go for their care, if they need outside help. Unless people are wealthy, long-term diseases like Alzheimer's can eat up most of your parents' assets. You'll have to accept that reality and so will they.

Your own health is expensive, too. If you get physically or mentally sick, you aren't going to be able to care for your loved ones well, if at all. You may have to explain this to your elders (and to yourself) repeatedly. But believe me, it's true. If you are coming to the end of your rope with caregiving, you need to get help. Guilt isn't an option. Your sense of guilt will only contribute to your parents' feeling of insecurity. So, please work on your own feelings about outside help. Think of this as giving more care, not about you caring less.

Assume as upbeat an attitude as you can, and start looking at assisted living facilities. Treat it as an adventure, even if your elders are complaining. Do your best to detach from their complaining and look anyway. Try to be cheerful but firm about any help you seek.

Nursing homes are for the sickest people. They, too, are expensive. Most people who spend a long time in a home end up spending all of their money and most of their other assets. They then go on Medicaid, which is the government help for the poor. A good nursing home should not give lesser care to someone on lower paying Medicaid than to someone who is on what they call "private pay."

When my loved ones moved to a local nursing home, I watched the staff closely. This was an exceptionally good home, to be sure, but I'll say that I never, ever saw any difference in care based on how the home got paid. Nursing homes are all supposed to be this way. If you see a home that discriminates, report this home to your state ombudsman.

Back to Your Own Needs

When you've had enough, you've had enough. No one who is burned out is able to do his or her best to care for another person. Don't let this happen to you. Get help before you are at the stage where your loved one needs more attention and help than you can give.

When caring for a parent with Alzheimer's becomes too much for you, you are at risk for depression and other health problems. You may even put your loved one at risk because you can't watch after him or her safely. Do it now before you completely break down. Do it for your family and yourself.

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Can't Take Being an Alzheimer's Caregiver Anymore?

Watching your once mentally sharp parent decline before your eyes. The parent's uncontrollable anger and outbursts. The devastation of memory loss. Worrying that your parent will wander away from home and never come back. When you are taking care of a parent with Alzheimer's, you are trying to cope with your own grief over their illnesses, help them with their feelings of loss, keep them safe, make your immediate family reasonably content and work at your job. You are wearing out, but caregiver guilt won't let you say – enough!

Listen to Your Own Needs

Most of us, when we have a vulnerable loved one, want to take care of them. We aren't excited about having strangers take over the care of our loved ones, and our loved ones normally aren't excited about that idea, either.

However, outside care eventually becomes a necessity for many. When we are talking about elder care, often people jump immediately to the "nursing home" solution, since in days past, that was pretty much the only choice people had once someone couldn't stay at home, or with family. Things have changed now, but that doesn't mean it is easy.

With more options for care comes more confusion. When is in-home help enough? Is assisted living the best option? And what about nursing homes? Are they the nightmares of the past?

That Promise You Made

Hindsight can make us pretty smart. Sometimes, when our parents are younger and healthier, we make promises: "I promise I'll never put you in a nursing home." We should not tell our parents we'll never put them in a nursing home, since we have no idea what the future will bring. Also, that promise just underscores their view of the old style nursing homes, which were truly depressing places.

Unfortunately, there are still areas of the country where nursing homes are far from excellent, and our whole nation has a long way to go before most homes are what they should be. But we are talking about your reality here. We are talking about what is happening right now.

You may have made a promise that you could need to break. If that's so, remember that by caring for your parent for as long as you have has honored the spirit of the promise (I snitched that phrase from a terrific hospice chaplain). The idea is that you've done all you can to keep your elders safe and to help them through some tough times. However, times have gotten tougher than you expected, and you must look for other options. That's okay.

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Weekly Planner (Bright Pink) Memo Pad

$30.95

Weekly To Do List Notepad (White)

$30.95

EZ-C Bold Yellow Weekly To Do List Notepad

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Dementia Signage for the Home

$22.75 - Financial Records Organizer Vinyl Binder

$22.75 - EZ-C Bright Green 3 Ring Binder

$26.90 - 3.5" x 2" Index Cards (100 pack) Business Card Templates

The Alzheimer's Family: Our Unique Journeys

Though they look through the prism of the future from different angles, people with Alzheimer's disease and their loved ones will likely find their lives dramatically altered after the onset and diagnosis of AD.

Certainly, the person who develops the disease is facing a life-altering and ultimately terminal disease. However, because of the intensive care needed by people with advanced Alzheimer's, and the pain involved in watching a loved one gradually lose their cognitive abilities, some people wonder if the caregivers endure more than the person with the disease.

Every case of Alzheimer's disease is as unique as the individual with the disease, and every caregiver brings unique traits to their caregiving journey. Each configuration, also, has different resources, different support systems and different coping skills. Thus, there is no one answer, and if there were the answer would likely change, depending on the challenges of any particular day.

A quick look at the Alzheimer's journey from inside

At this time, Alzheimer's disease is considered incurable. People who develop AD tend to die from seven to 10 years after diagnosis, though some can live as long as 20 years. Still, upon diagnosis, the person diagnosed knows instantly that his or her life is going to change dramatically.

• Though testimonies from people with AD illustrate that many people with dementia continue to enjoy life for a number of years, there is no denying that their life will change dramatically, over time.
• The person with AD must come to terms with the fact that as time moves forward, he or she is likely to lose the ability to live independently. Worse for many people, is the realization that one's memories and ability to reason will likely be stripped away. Their feeling of dignity as a human being is subject to being altered, as well.
• Most people like feeling as though they have some control over their lives. The person with Alzheimer's lives in a world that is increasingly confusing, and often frightening, as the stages of the disease move forward. Making sense of one's surroundings becomes nearly impossible.
• Paranoia is an understandable development in many people with Alzheimer's. When the brain tells a person one thing and everyone around this person is saying the opposite, it would be natural to wonder if people are playing tricks on them, lying to them or even stealing from them. Paranoid behavior in AD is quite common and causes great pain to both the person with the disease and the caregiver.
• People with the disease generally become completely dependent on others, which is hard enough for most people. However, with AD, the person will likely lose the ability to remember who their caregivers are from moment to moment. Spouse, child, grandchild? Eventually, only the feeling of being dependent on a complete stranger may remain.

The caregiver's journey

Caring for a person with Alzheimer's is intensive and stressful, and it can be all-encompassing. After a loved one is diagnosed with Alzheimer's disease people generally suffer through an agonizing period of grief. It seems impossible to accept the fact that their spouse or parent has a disease that will rob him or her of personality, memories and the ability for self care. Yet, there is no alternative but to accept the diagnosis and move forward.

• One of the first things most people do after the diagnosis is to plan for the inevitable changes Alzheimer's brings. However, with Alzheimer's there are many variables. Some people do quite well for months or even years. Others will decline quickly. Yet, the family must try to look ahead at the changes that will most likely occur, and plan with their loved one how best to manage the disease and future care.
• With AD, people can change moods in an instant. The caregiver may be constantly on edge, worrying about mood swings, incontinence issues or the person wandering away and getting lost. Some people with AD have significant personality changes, which is distressing to loved ones.
• Watching the slow process of Alzheimer's rob a loved one of memories and abilities can be excruciating. People who love and care for someone with Alzheimer's disease face the daily task of accepting the losses their spouse or parent must endure, all the while knowing that at the end of this journey they will suffer the second loss of their loved one through death.
• The paranoia that often accompanies Alzheimer's can turn the diagnosed person against his or her caregiver, leaving the caregiver feeling helpless and ineffective.
• Alzheimer's disease is progressive and there is a downward spiral through recognized stages, however that doesn't mean the disease leads down a straight path. This uncertainty can contribute to the caregiver feeling uniquely alone and isolated, even when support services are offered.

Considering the challenges that people with Alzheimer's disease and their caregivers face, is there any joy at all in the journey? For many, yes. Caregivers can and do find joy in caring for someone they love, even if exhaustion and occasional impatience can make them wonder how long they can continue this intensive care. Most people eventually need to include paid outside help.
As for the person with Alzheimer's, many find a new determination after the diagnosis to live each day as fully as possible. They are aware of the changes that loom in their future, which makes the present more precious.

Who has a more difficult time? I believe that question is like most other quality of life questions. The attitude of the people involved, as well as their resilience, their flexibility and ability to accept what life hands them, will make the answer to this question unique for every Alzheimer's family.

Dementia Signage for the Home

_____________________________

Weekly Planner (Bright Pink) Memo Pad

$30.95

Weekly To Do List Notepad (White)

$30.95

EZ-C Bold Yellow Weekly To Do List Notepad

______________________________

Dementia Signage for the Home

$22.75 - Financial Records Organizer Vinyl Binder

$22.75 - EZ-C Bright Green 3 Ring Binder

$26.90 - 3.5" x 2" Index Cards (100 pack) Business Card Templates