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Caregiver burnout

Care giving for a spouse suffering from Alzheimer’s disease or another form of dementia raises the mortality of the spouse providing the care.

This is a very complex time in life. We often see a family caregiver who has lost weight, is sleep deprived and a has compromised immune system. It is ironic that the family caregiver’s health fails while their loved one is in relatively good health other than the effects of dementia.

Resentment can also set in on the caregiver. Irritability, hopelessness and helplessness also take over. Some are filled with anger, sadness, and a sense of failure. Depression is a risk as a result of these stressors, emotions and illnesses. It becomes clearer why caregiver mortality rises.

Studies show that mortality rises when a spouse is providing care for dementia.  Most studies show about a 63% increase in mortality for the caregiver in this type of situation.  Unfortunately it does not stop there.  A study done by The New England Journal of Medicine in 2006  shows that a wife’s risk of death is 61% greater during the first 30 day following the death of her husband.  While not as great, the husband’s risk is 53% following the 30 days after his wife passes.

Imagine planning for your golden years throughout your adult life. Perhaps you envisioned traveling the world on cruise ships, or seeing the USA in a RV, or even a simpler life puttering around in the garden, doing things you never had time for earlier. These visions fade because of a horrible disease.

Providing care for your spouse with dementia makes it difficult to sleep, shop, cook, and do most other activities that were routine and once taken for granted.  Socializing becomes a thing of the past. The caregiver stops going to church, family functions, and social events as a result of having to stay home to make sure their spouse is safe.  Isolation and burn-out can be self imposed because of the belief that no one can do it as well as a family member.

Furthermore, the family caregiver feels a loss of  identity as mom, dad, friend, confidant, grandma or grandpa when every ounce of energy is directed at caregiving.

There are devastating consequences to personally providing 24 hour care 7 days per week without getting outside help.

If you can identify with the above, take it upon yourself to get help. Many communities have caregiver support groups where you can find out how others cope successfully. Senior centers may offer day care and there are agencies where you can hire caregivers to give you a break by coming in for a few hours on a regular schedule. Assisted living facilities often have respite programs for overnight stays.

 

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Masking Memory Loss

As children grow up and leave the nest, they often spread out to different cities and even states. Career opportunities, a desire to live in a different environment, or the location of spouse’s family are just some of the reasons for moving away from their home town. Sometimes, they just need a little breathing room from their siblings or an overbearing parent. Family relations don’t ease with distance but may possibly soften over time. That is until, family members are confronted with a difficult situation.

Let’s say for example Joe, the oldest son, moved to the East Coast shortly after graduating from college. He made a point to visit twice a year, until the demands of his own family and job prevented him from making regular trips back to California. The youngest daughter Julia became a nurse and remained close to her parents in their home town. She and Joe had opposite temperaments and often did not get along. Julia is a natural caregiver and realizes how much she needs to compensate for her mom’s lapses in memory and ability to complete complex tasks. This has been taking its toll on her energy and is affecting her relationship with her own husband and kids. When Joe comes to visit, Mom is on her best behavior.  He doesn’t understand why Julia is so concerned about their mom’s decline. He resists any notion that mom has slipped.  Julia accuses him of being in denial. She becomes angry with Joe because he doesn’t see the sacrifices Julia is making for their mom.

Often times, those who are closest to the person experiencing memory loss are more likely to accurately assess the situation. Family members who are more remote, either physically and/or emotionally don’t seem to accept that there is a problem.

Those in the earlier stages of memory loss often practice a phenomenon I like to call “performing.” They realize they are expected to respond in a certain way while in a familiar situation. In the example above, Mom seems perfectly fine because she is performing. Conversations seem to flow easily because she is in complete agreement with Joe’s comments. She may not be able to articulate that it is hot outside, so she replies “Isn’t that the case.” when Joe remarks on the summertime. She will cover up the fact that she shoes are on the wrong feet because they are so comfortable that she didn’t even notice. She will ask Joe to set the table because he is so good at it, rather than reveal she can’t remember which side to place the fork.

The best way to get a remote sibling to see the real behavior of their parent is to identify the times when, in Joe’s case, mom is performing. He could make a statement that is clearly nonsensical and listen to mom agree. By gently challenging mom to do something spontaneously,  Joe could observe that lost look in her eyes, and perhaps frozen body language. When mom doesn’t know that he is watching, she is likely to reveal herself the way Julia sees her.

When family members can work together to accurately assess memory loss in a parent, they are in the best position to seek the appropriate level of care. Denying or delaying medical treatment for the parent and support for the caregiver is an injustice to the entire family.

 

 

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Reversing Roles between Parent and Child

Age related illnesses often cause parents to depend on their children for care. Roles become reversed. This is a confusing time to shift orientation from the self sufficient parent who guided and supported their children, to a parent who is dependent and needy.

Adults are faced with uncertainty on how to relate to their aging parents. Feelings of guilt, regret, and incompetence accompany the role reversal. No matter how much the adult is compelled by love, decency and gratitude for their parents, it feels strange to  become the caregiver.

Adults of aging parents are often in the stage of their life that is incredibly demanding. They are working long hours and caring for their own offspring. How do they add another time consuming role of caregiving for their own parents? The response we frequently hear is “You do what you have to do.” They squeeze in the time to try to do it all.

There are only 24 hours in a day, so something has to give when dividing time between work, spouse, parents and children. Activities which support well being such as hobbies, fitness activities and socializing are let go. Despite cutting back on time for themselves, there is still not enough time in the day. Adults doubt their effectiveness on the job, in their marriage, at caregiving and parenting.

We offer these tips to those who feel overwhelmed when caring for their parents while managing all of the other responsibilities of their current roles:

  • Acknowledge your feelings, then move on. You may have regrets that you didn’t do enough for your parents, spouse and children. If you realize that no one can please everybody all the time, you might just give yourself a well-deserved break.
  •  Slow down and take a breath. Breathing will calm you down and improve your ability to think with a clear head.
  •  Let go of the notion that no one can do it as well as you. Let others help when offered. Ask for help when needed. Allow your children to help their grandparents within their abilities.
  •  Explore opportunities for respite. There are home health agencies which offer respite services on an hourly basis, and many assisted living communities will provide care for several days/weeks. If there is no money to pay for respite, ask another family member or trusted friend to give you a break.
  •  Realize that you are not alone. Confide in your friends and clergy about your doubts and fears.

Caring for others without short-changing yourself can be tremendously rewarding. It is the greatest honor to help those whom you love.

 
 

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Be Prepared for the Future

Some people work better under the stress of a deadline. They tell themselves that they are only motivated to do their best under pressure. That may be true, but it is risky to apply that situation when seniors (and their children) have to make health care decisions in a crisis mode.

It is natural to feel uncomfortable to confront the inevitability of failing health or death with family members. Perhaps you are the daughter or son who feels it may be disrespectful to bring up the topic to Mom and Dad. Or you may be a parent and want to spare your kids from envisioning the time when you will not be strong enough to make decisions on your own.

Don’t wait for the perfect time, because there is no perfect time. Things can change suddenly, and if you don’t know your family  members’ wishes, location of documents and other vital information, it will be much more difficult to manage in a crisis situation. Discussing far-off, hypothetical scenarios are actually easier to address rather than when reality hits and you try to sort out options in the emergency room.

A good first step is to find out if there is a current will, a durable power of attorney, a health care power of attorney and an advance health care directive
(also known as a living will) in place. If not, now is the time to consult a lawyer about the purpose of each document and to understand your loved one’s options.

Exploring these legal issues will bring up many of the decisions that will need to be made. For example, your family member will need to give someone the authority to make financial and legal decisions on their behalf when completing a durable power of attorney. A health care power of attorney will require naming someone who will be responsible for medical decisions in the event of  physical or mental incapacity. An advance health care directive will provide instructions specifying what actions should be taken in the event they are no longer able to make decisions due to illness or incapacity.

Be careful about finding free forms on the Internet. While the forms may look similar to those drawn by an attorney, you can’t be sure that the “do it yourself” document will be accepted by all financial institutions and insurance companies. Additionally, different states require different criteria. Do it once, and do it correctly.

Does your family member desire aggressive medical interventions using the latest technology to battle an incurable health condition, or would they rather forego life-sustaining measures that would serve only to prolong dying? There is a document called POLST that is printed on brightly colored pink paper so it cannot be easily overlooked. POLST stands for Physician Orders for Life-Sustaining Treatment which is designed to give people more control over end of life care. The individual can detail their wishes about the degree of medical intervention they desire. It is signed by the individual and their doctor and represents a promise by all health care professionals to honor the wishes stated in the document. The POLST should accompany the documents listed above. It is not a replacement for an advance health care directive.

There are also personal preferences beyond financial and health care issues that are important to talk about. How does your family member feel about alternative living arrangements if he or she can no longer safely stay at home? If a crisis arises, who should be contacted? Do you have the names and phone numbers of their doctors, lawyer, relatives, clergy, or even friends?

These are weighty issues, and are not likely to be settled in just one conversation. It is a good idea to talk about it in person, rather than on the phone, emails or letters. Be patient and open to their responses, without bringing a hidden agenda according to what you believe is best. You may be surprised about your family member’s wishes.

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Decisions for Parent with Alzheimers

Siblings dealing with decisions for a parent with Alzheimer’s face special challenges. If handled well, these decisions can bring the family closer together. Handled poorly, these same decisions can drive a wedge between family members and at worst, lead to a family divorce. When parents show symptoms of dementia, family members have to tackle some tough issues. These include financial decision making, managing medications (or even agreeing to see a doctor,) finding a caregiver and perhaps the toughest issue – seeking long term care.   

Here are some common problems that families run into regarding facing decisions on behalf of their parents:

  • Some family members may be unwilling to accept their parents’ change in abilities to manage their checkbook, drive safely, prepare balanced meals and look after their own health. Others may overestimate their parent’s ability to continue to live independently.
  • Not all family members are equally involved in their parents’ lives. Some members may live far away whereas others are actively involved and have frequent contact. Sometimes proximity isn’t a factor – certain siblings are frequently too busy with their own children, work, etc. Those who have remained close may feel they should have more weight in the decision. The post at http://www.psychologytoday.com/blog/singletons/201108/planning-your-parents-or-your-old-ageshows that the responsibility often is shouldered by daughters living in close proximity to their parents.
  • Family members can also differ in the level of financial contribution they might have to make for their parents’ care. Those family members who contribute more may feel that they should have more say in the decision.

 A family who forms a Family Council is likely to face tough issues which serve their parents’ best interests and promote harmony among family members. Here are some of our recommendations to make the process go smoother. 

  • Don’t wait to the last minute. Be proactive in starting a Family Council. Start the process before you need to make a decision. Avoid having to make a decision under pressure and in a rush. A parent with advancing symptoms of Alzheimer’s may not be fit to appoint a Power of Attorney and may have to be conserved. Conservation is expensive, as well as tedious. You can learn about the issues at http://www.calelderlaw.com/blog/2010/08/10/conservatorship-basics/
  • Approach the situation with some formality. Identify who will be involved and when you will meet. It is best to meet on an ongoing basis to talk so that all members can actively participate.
  • Share information openly. Make sure that all members have the same information.
  • Meet regularly. It often takes several meetings to resolve care-related issues.
  • Document your conversations so that you have a record of your discussions.
  • Have your parents participate. You want the conversation to be as open as possible. Your parents should have a voice and be able to make their wishes known.  

Most importantly, decide how you will decide. Start by recognizing that everyone has different opinions and there will be disagreement. Decide how you will deal with disagreement by choosing a decision making method. Should majority rule or must everyone agree? Can family members who are more involved or have greater financial responsibility have a bigger weight in their decision? Perhaps the answer is to appoint one family member as the final authority.  

Making decisions for a parent with Alzheimer’s can be focused toward the best interest of the parent, and produce the best outcome, when using the Family Council approach.

Mary Burger writes dementiadvice. She is the owner of A Brand New Day a full-spectrum long term memory care facility in Redding CA.

 

 

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