Alzheimer's Caregiving Essentials

6 Essentials Every Alzheimer's Caregiver Needs

Most people simply dive in to the responsibility of caring for someone with Alzheimer's disease and then take it one day at a time. Fair enough. But before you find yourself combating both his disease and your own emotional strain and battle fatigue, be sure you have these stress-busters on your side.

1. Good Self-Care

Don't even think of skimming by this one. You really do need to come first on the priority list, not last. It's almost too easy to neglect your own needs when you're juggling caregiving, a job, a marriage, and children.

But just as with tending to a child, caring for a sick person can be depleting. If you fail to keep an eye on your own mental and physical health, you're vulnerable to everything from colds and other illnesses right up to burnout.

No one can keep up with the round-the-clock demands of Alzheimer's care -- even in the early stages -- without periodic relief. Indeed, caregiver burnout is a primary reason Alzheimer's patients enter nursing homes.

Make time for yourself every single day, even if it's just a 20-minute walk while a neighbor pays a visit. Don't abandon all your former interests and hobbies to support someone with Alzheimer's.

You don't have to eat the same food as him (especially if he's down to simple, easy-to-manage foods), but neither do you have to subsist on drive-through fare. Stock up on nutritious, easy-to-grab snacks if time is an issue.

Getting enough sleep is a special concern: To help yourself fall asleep, try incorporating some relaxation exercises or meditation into your nighttime routine. Some people benefit from yoga, tai chi, or deep breathing exercises. A good tension release is progressive muscle relaxation, a technique that calls for tightening and relaxing all of your major muscle groups, one by one.

Your wind-down can be as classic as a warm bath or a good book. Whatever your choice, make it routine -- at about the same time each evening, if you can -- to help your mind associate the activity with rest. Reorganize your bedroom so that it's a haven rather than a cluttered workspace.

Get a medical exam yourself, and be sure to tell your doctor about your situation. She may be able to give you some strategies to deal with stress and anxiety, and can help you identify signs of clinical depression and, if needed, treatment options.

2. The Ability to Ask for Help

Alzheimer's care can be all-consuming, and it's a common caregiver temptation -- and mistake -- to take it all on yourself. Having ample help keeps Alzheimer's caregivers functioning longer and more smoothly.

Of course, asking for help isn't always easy. You may not want to bother others with what you see as a family matter or your responsibility. Sometimes it seems easier to do it yourself than to get another person involved.

In fact, most people around you are more than happy to pitch in but often have no idea what they can do for you, so they may not volunteer except in a general way. When you do ask, they're apt to be relieved that they can be of use and have the opportunity to show their affection for you or the person with Alzheimer's.

Make a list of everyone who might help you manage his new life, along with contact information. First on the list, place family members and friends.

Give thought to what kind of specific help each person might provide, no matter how large or small. For example, a neighbor might pick up groceries while she does her own shopping. A teenage cousin might be able to drive the patient to medical appointments or run errands.

Add to the list every individual who volunteers or asks, "How can I help?" Include people who would help you simply by being an understanding companion to call or visit.

Then make another list of all the tasks you feel responsible for on a daily basis. Of those:

  • What can you delegate?
  • What can you outsource to a paid provider (food delivery, cleaning services, pharmacy by mail)?
  • Who can run errands for you?
  • Who can spell you for a matter of minutes or hours?

If someone can't help, they'll tell you. But you'll never know all that they can do to ease your load unless you first ask. When you can, take a longer break by recruiting someone else to take over the primary-caregiver role for a day, a weekend, or even longer. Remember, you don't have to do it all yourself.

3. Family Cooperation

If the person with Alzheimer's is a member of your family, your immediate family is likely to be your primary source of support and relief. Siblings often trade off care duty and share financial burdens.

But there are tremendous emotional benefits to a united family, too. Decision making is much easier when families are in general agreement. You'll also be less likely to feel guilty or isolated, second-guess yourself, or waste mental energy feeling resentful or unappreciated if you can all work toward consensus (or at least mutual respect).

Having the support of your partner and children, if you have them, similarly removes a huge source of stress.

Work to keep everyone on the same page regarding the person's condition and the important decisions that must be made. When there's friction, consider bringing in a third party -- such as a respected relative or a neutral geriatric care manager -- to mediate.

Be aware from the get-go that Alzheimer's caregiving can become a source of marital conflict if your partner feels that you're neglecting him or your "other" family. Take care not to discount criticisms in this vein. And do what you can to keep your other relationships strong. You may need to bring in outside care to achieve this goal, and you shouldn't feel guilty if you do. Your relationships with your partner, family, and close friends will likely outlive the person with Alzheimer's if tended well.

4. Community Resources

Alzheimer's-related services offer practical and emotional support that can transform a difficult time into one with pleasant moments, too. What's more, learning about respite care, caregiver training, and assistive devices to make physical care easier has been found to ease stress and delay the need to place a loved one in a nursing home, according to a 1997 Urban Institute report.

You'll particularly need outside support if you're coping with wandering, sundowning, or disturbed sleep.

You may be surprised by the variety of people, programs, and devices available to make your life easier, many of them at little expense. Start by conferring with the doctor of the person you're caring for and branch out to specialists, geriatric care consultants, therapists, and community programs such as respite care. Alzheimer's disease associations and support groups are often free and a great way to receive emotional support as well as to learn caregiving tips and ideas.

5. Realistic Expectations

Not having a clear picture of your situation or the prognosis sets you up for rude awakenings or a lot of unnecessary struggle. Once you know what to expect, you can adjust your expectations accordingly. This process also makes it easier to accept his fate.

Learn as much as you can about Alzheimer's and stay abreast of what to expect at different stages of the disease. Talk to others who've lived through the caregiving experience on message boards or in support groups. You'll be better able to deal with what you're going through and gain a peek at what could lie ahead.

You'll learn from experience to be realistic about expectations for the person with Alzheimer's. Keep outings with friends relatively brief and uncomplicated. Figure out what kinds of food, activities, music, and other daily routines work -- and stick to them.

Be realistic, too, about your expectations for family members. Distant siblings may simply not be able to devote the same time to caregiving as those nearby, for example. Children may be disturbed or frightened by the changes in a grandparent and shouldn't be expected to understand the disease and pursue the same kind of relationship as before.

6. A Game Plan

Alzheimer's disease is progressive, which means that while the person with Alzheimer's may stabilize for a long stretch of time, he'll never recover lost abilities. He'll only gradually worsen over time.

It's one thing to understand the progression of the disease but a different matter to put a corresponding action plan in place. Having a plan makes the emotional transition easier and helps everyone understand the needs involved, financial and otherwise.

You may not be able to address every possibility, but you can start by researching what's likely to happen when -- and your corresponding options. Start by dividing your planning into stages:

  • What needs to happen at this stage in terms of care?
  • Who will provide care?
  • Where will he live?

For example, soon after diagnosis you'll need to arrange access to medical, legal, and financial records, as well as the transfer of decision-making authority to you, another family member, or a close friend. By the end stage, someone with Alzheimer's needs round-the-clock care, and you can start to figure out where that would take place and by whom.

Start conversing with family members about these things now, even if they're difficult. Get the input of the doctor, a geriatric care manager, and other professionals involved in her case. In the long run, you'll be glad you did.

Other essentials for taking care of someone with Alzheimer's

3. Family cooperation

If the person with Alzheimer's is a member of your family, your immediate family is likely to be your primary source of support and relief. Siblings often trade off care duty and share financial burdens.

But there are tremendous emotional benefits to a united family, too. Decision making is much easier when families are in general agreement. You'll also be less likely to feel guilty or isolated, second-guess yourself, or waste mental energy feeling resentful or unappreciated if you can all work toward consensus (or at least mutual respect).

Having the support of your partner and children, if you have them, similarly removes a huge source of stress.

Work to keep everyone on the same page regarding the person's condition and the important decisions that must be made. When there's friction, consider bringing in a third party -- such as a respected relative or a neutral geriatric care manager -- to mediate.

Be aware from the get-go that Alzheimer's caregiving can become a source of marital conflict if your partner feels that you're neglecting him or your "other" family. Take care not to discount criticisms in this vein. And do what you can to keep your other relationships strong. You may need to bring in outside care to achieve this goal, and you shouldn't feel guilty if you do. Your relationships with your partner, family, and close friends will likely outlive the person with Alzheimer's if tended well.

4. Community resources

Alzheimer's-related services offer practical and emotional support that can transform a difficult time into one with pleasant moments, too. What's more, learning about respite care, caregiver training, and assistive devices to make physical care easier has been found to ease stress and delay the need to place a loved one in a nursing home, according to a 1997 Urban Institute report.

You'll particularly need outside support if you're coping with wandering, sundowning, or disturbed sleep.

You may be surprised by the variety of people, programs, and devices available to make your life easier, many of them at little expense. Start by conferring with the doctor of the person you're caring for and branch out to specialists, geriatric care consultants, therapists, and community programs such as respite care. Alzheimer's disease associations and support groups are often free and a great way to receive emotional support as well as to learn caregiving tips and ideas.

 5. Realistic expectations

Not having a clear picture of your situation or the prognosis sets you up for rude awakenings or a lot of unnecessary struggle. Once you know what to expect, you can adjust your expectations accordingly. This process also makes it easier to accept his fate.

Learn as much as you can about Alzheimer's and stay abreast of what to expect at different stages of the disease. Talk to others who've lived through the caregiving experience on message boards or in support groups. You'll be better able to deal with what you're going through and gain a peek at what could lie ahead.

You'll learn from experience to be realistic about expectations for the person with Alzheimer's. Keep outings with friends relatively brief and uncomplicated. Figure out what kinds of food, activities, music, and other daily routines work -- and stick to them.

Be realistic, too, about your expectations for family members. Distant siblings may simply not be able to devote the same time to caregiving as those nearby, for example. Children may be disturbed or frightened by the changes in a grandparent and shouldn't be expected to understand the disease and pursue the same kind of relationship as before.

6. A game plan

Alzheimer's disease is progressive, which means that while the person with Alzheimer's may stabilize for a long stretch of time, he'll never recover lost abilities. He'll only gradually worsen over time.

It's one thing to understand the progression of the disease but a different matter to put a corresponding action plan in place. Having a plan makes the emotional transition easier and helps everyone understand the needs involved, financial and otherwise.

You may not be able to address every possibility, but you can start by researching what's likely to happen when -- and your corresponding options. Start by dividing your planning into stages:

  • What needs to happen at this stage in terms of care?
  • Who will provide care?
  • Where will he live?

For example, soon after diagnosis you'll need to arrange access to medical, legal, and financial records, as well as the transfer of decision-making authority to you, another family member, or a close friend. By the end stage, someone with Alzheimer's needs round-the-clock care, and you can start to figure out where that would take place and by whom.

Start conversing with family members about these things now, even if they're difficult. Get the input of the doctor, a geriatric care manager, and other professionals involved in her case. In the long run, you'll be glad you did.


over 4 years ago, said...

I took a six week course at the VA on this very subject. It was of immense help and so this will be for those seeking information.


almost 5 years ago, said...

Suggest ways you can get a son/daughter to accept what is happening to their parent. Even adult children often dont want to know. At least ours doesnt. Nor do any othre family members by the way


almost 5 years ago, said...

The helpful part is just being reminded that I cannot do it all. I am sole caregiver of my husband of 37 years. He was diagnosed 2 1/2 years ago. I have 1 daughter who is a big help when she can.


almost 5 years ago, said...

The reminder that we cannot do it alone, and need to concentrate on getting and accepting help.


over 5 years ago, said...

Yes, these reminders are great...as a caregiver I do tend to forget myself -- So far, though, I have managed to get away from the house for an hour or two each day, and I save a couple of hours in the evening after my husband goes to bed to just relax, watch tv, regain my space. It's hard to know when and how to get more help in the house, however, as he is so resistant to anyone coming in.


over 5 years ago, said...

My father, who suffers from this disease, forgot my birthday this year. At first I felt hurt and angry, but then his wife sent me clues and information on Alzheimer's and I realized not only had I been careless about getting involved in his condition, but that this forgetting was a sign that he might be getting worse. I have since offered to do more and will be visiting him as often as I can. This is a burden that needs to be shared by all who love the ones so stricken. Love you Dad.


over 5 years ago, said...

Send my husband a big hug!!


over 5 years ago, said...

This was an excellent article and very helpful. I actually made some phone calls to get some help. It made me face the truth that I can't do this alone. I have been trying to do this by myself and am being to lose it.


over 5 years ago, said...

All information regarding this disease is helpful, all of it.


almost 6 years ago, said...

Several times while reading this article, I said to myself, "that sounds like my situation". We just recently placed my mother in an outside care facility after taking care of her in our home for 5 years. It's good to have resources like your website for support.


about 6 years ago, said...

i'm still trying to figure out how to handle things as we(my husband) was diagnosed 7 months ago. Scares the living daylites out of me sometimes.. It helps to read others input.


about 6 years ago, said...

Please help. I have obsessive/compulsive disorder and I can barely take care of myself let alone taking care of my husband. He is a mechanical engineer who had a good job and now he is like a child. I am attacking any members of my family who will listen. We have a daughter who is a nurse and she will not speak to either one of us because she hates us. I have no one to help me and I am getting very upset with the rest of my family. It is not their fault that I have to go through this but I am just looking for help.


about 6 years ago, said...

How should you handle the cantankorus comments and actions of the alzheimers patient? My mother is caring for my step- dad , and he is so aggressive and hateful to her at times, and it angers me! He has also had a stroke, but is mobile, She is working full-time outside the home, and comes home everyday at lunch to make sure that he is alright-obviously, my adult brother stays there too, but he only gets hateful with mom-I worry that he will drag her and her health down-What to do or how to handle?