Caregivers

This page is for you caregivers, whether you are doing direct care or not. If you are the guardian of your loved one or are orchestrating care for your loved one or doing one-on-one care, taking care of yourself is as important as taking care of your loved one. If your health and well-being suffers, so will that of your loved one. It is not a sign of weakness to admit you are overwhelmed, depressed, sad or need help. Rather it’s a sign of strength: that you know yourself and your limits. 

Can you do it? Do you want to? Personality issues – Other commitments
Not everyone is cut out to be a direct caregiver. It is nothing to be ashamed of. It’s important to recognize if that’s the case and adjust accordingly. Even if you can do it, you might not be able to because of other commitments; like a job, or raising a family, or your own chronic medical issues, or frequent moves. Whatever the reason, there’s no shame in not doing the direct caregiving for your loved one. As an alternative, you might be able to keep your mom in her home with enough outside help (expensive), or you might feel better about placing her in a facility near you (usually less expensive). That way you are completely sure she’s safe and there’s enough help. if you hire someone to come in to help, that person needs days off, sick days, vacation and so on. A well-staffed facility won’t have that problem. 

stress_scaledStress and Frustrations
It is an understatement to say that caregiving a loved one with a dementing illness is frustrating and stressful. There’s no way it can not be so. This page will help you recognize the dangers of not paying attention to your own stress and frustration: dangers that impact you and your charge.

Most people know when they are stressed: they eat more (or don’t eat), sleep poorly, drink more alcohol, withdraw from friends and family, are angry with their loved one, are anxious about what lies ahead, are irritible and have trouble concentrating.

Some of our frustrations are beyond our control: like our loved one’s wet diapers which need changing, their wandering, insomnia or perseveration. But some of our internal responses to stress and especially the thoughts that lead to those responses are within our control. It is important to ‘own’ that aspect of stress and frustration for which we are responsible, like: negative thinking (especially talking oneself down), personalizing, over-generalizing, and having “should” thoughts

“Should” thoughts and negative thinking:
Your mom is in a facility near you and you go twice a week to visit and have a meal. Someone else you know is caring for her mom full-time in her own home. You start the negative and should thoughts: “Oh, Cherie is caring for her mom and doing everything and I should be visiting my mom more, I’m a lousy daughter”. More helpful is to try to change your thinking and not compare yourself to Cherie, to applaud yourself for what you are able to do: “I am doing the best I can and I have a lot on my plate. Mom is safe and at a great place and when I get a chance I visit her.”  Caring for someone with dementia is difficult enough, please don’t make it more so by talking yourself down.

Generalizing and Personalizing
When my good friend was caring for her mom, she used to like to try to cook what her mom loved. She would cook for them both plus whomever was visiting. She once made a wonderful meatloaf that her mom had previously loved. But after her mom’s first bite, she spit it out and declared, “This is inedible”.  Instead of shrugging it off, my friend generalized “She doesn’t like my cooking” and personalized “What’s the matter with me, I don’t so anything right”. Actually once she realized that her mom would eat if the food was sweet, she always added honey: even to her turkey sandwiches at lunchtime. My friend had many siblings none of whom helped her out. Gradually, she was able to appreciated all she had done for her mom and stopped personalizing the small blips in her caregiving.

http://www.dreamstime.com/-image323287Sibling Involvement (or not)
The most common scenario in dementia caregiving to a parent is that one child does the lion’s share of the work. It happened in my case and in most I know about. Often times even in large families it falls to one of the female children, whether she lives close by or not. In many cases, some family members are in denial and won’t admit their mom or dad has cognitive or memory issues. In others, old patterns of relating (dysfunctional or not) re-emerge. Many times the caregiver or responsible person has no help from siblings who, despite that continue to advise or criticize. No wonder there are resentments. In other situations, siblings who have legal authority but do no work are reluctant to relinquish those testaments. Then the person left with the work has to figure out some way to gain authority. In the best circumstances with cohesive families, there is a lot of back and forth communicating, mutual family decisions and supportive interactions. But don’t be surprised if you find yourself doing this job alone. If possible try to:

*Have family discussions
*Get direct help from your siblings, in the ways they can actually help
*Acknowledge to yourself the siblings you cannot change or who won’t help
*Try to forgive the ones who don’t help (they can’t)
*If you have no help from siblings, get it elsewhere

Emotions
The combination of the stress and frustration plus often inadequate help or support can easily lead to a range of difficult emotions. Anger, guilt, resentment and especially grief are usually present and often prominent. 

Anger and Resentment
Anger is often felt toward the loved one, even if inappropriately. We are not only angry at them because of all the work we have to do, but angry that they are no longer the person they were. If it’s a spouse, we are angry at the loss of intimacy and closeness. If it’s a parent, we can be angry that we are taking care of them (role-reversal) instead of the other way around. Or we feel mad at friends for pulling away from us or from our loved one, leaving us isolated.

Guilt
Guilt for the normal emotions we feel, especially the anger is very common. Guilt because we don’t always have the energy to do everything we imagine we should do for our loved one. Guilt because we have negative thoughts that we want this to be over (that is a very common thought) or to have them in a nursing home soon. Guilt because we make mistakes. Guilt has no place in the journey that is dementia caregiving. Every person who does this, does their best, often with insufficient help or support and limited finances. Try to pat yourself on the back for the good job you are doing and lose the guilt.

http://www.dreamstime.com/-image193337Grief
Most of the emotions we have would be easier to handle if we admitted to ourselves that when we are caregiving to a demented loved one we are in a continuous state of prolonged and anticipatory grief. All the other emotions, the resentments, the anger, disappointments and guilt pale in comparison to the grief. There are many reasons for the grief: we are losing little by little the person we knew, we have lost the relationship we had with them, we have lost the dreams we had of repairing the broken parts (especially if we are caregiving to a parent) and we have lost the dreams of a cohesive retirement if we are losing a partner. These feelings are very real. But we hesitate to admit them because we don’t want to cry. The truth is that often times tears will bring relief and will allow us to give the care with more ease.

Ambiguous loss
The losses you are experiencing are very real. In particular the loss in caring for someone with a dementing illness is ambiguous. The person is there but not there. The person you are caring for has become foreign to you even if it’s your mom or your spouse. But it is because of the illness, not their doing. You are losing someone but don’t have any official mourning rituals to go through. Try to think a bit like this to temper the ambiguity:

*My loved one is both here and gone.
*I can be sad about what is happening to my loved one, but proud that I can help her and happy that I have a new granddaughter. 

In general I think it is important to admit the feelings you have and let them ‘inside’. Don’t judge them, try to change them or try to get rid of them. If you let them “in” and let them alone and just notice them, it’s likely they will depart sooner. That has been my experience and the experience of other caregivers. Some of these emotions just come with the territory. 

Depression
However, if you have the following symptoms for more than two weeks:  crying so much you are immobilized, not sleeping (because of yourself, not your loved one’s insomnia), eating poorly, increased irritability and withdrawing from life, you are likely depressed and would benefit from a little professional help.

Caring for yourself 
There are a number of things you can and should do to maximize your own health and well-being while on this caregiving path. Each of these is essential to your ability to care for your love one.

Sleep
Getting enough sleep is very important to your health and to your ability to care for your loved one. Without sufficient sleep you are not at your best and you are apt to make errors and to lose your temper. Adequate sleep is vital. So if you aren’t getting enough rest because your loved one has insomnia and is waking you, try to get someone else to do some nights for you.

http://www.dreamstime.com/-image27260118Exercise
Almost as important to your health is getting adequate exercise. If your caregiving duties can involve long walks for you both that’s all to the good. It has been shown repeatedly that regular exercise in the elderly improves cognitive functioning. It also helps caregiver mood by releasing specific neurotransmitters that alleviate both physical and mental pain. If your mom or spouse is in a wheel-chair you can take her for outings and wheel her around parks and recreation areas. That way you’ll be building up strength as well as endurance. Even if you cannot go out to exercise, there are videos, books, strengthening exercises you can do at home.

Healthy Eating
A good balanced and healthy diet will not only be good for you loved one, but for yourself as well. Plenty of fruits and vegetables, fish and chicken. Of course it is essential to have some sweet treats now and then. They are good for the soul.

Respite
You have to take a break from caregiving from time to time. Better still if you can schedule breaks into your weekly routine. Three times a week if possible. Have your siblings pull their weight if you can. If you can bring your loved one to an adult day care program a few times a week, please try that. In-home services are also available and sometimes will be paid for (veteran’s benefits, state agencies). This link http://www.helpguide.org/elder/respite_care.htm will help you sort out your and your loved ones needs.

Support
Support can come in many forms. Talking with understanding friends and family, talking with your health professional, your minister or a counselor or going to a support group can be helpful. The Alzheimer’s Association has chapters in every state and most larger cities host monthly support group meetings http://www.alz.org/care/alzheimers-dementia-support-groups.asp. Some people find prayer and/or meditation provides relief and a sense of restoration that nothing else can. And of course, these are not mutually exclusive. If you can get out with a friend for a lunch and prayer, or a yoga or meditation class before your support group, more power to you.

Get the Authority to do the job
This is often neglected but it is vital. If you are doing the lion’s share of the work, either direct caregiving or overseeing the care, you will need some authority to do the job properly. Either Guardianship of the Person, Power of Attorney or Health care proxy are important. To find out which gives you most control over your loved ones physical care try to contact an elder lawyer in state where your loved one lives. She or he will be able to tell you what you legally need to do the job.

For more information for caregivers check out these resources.