Caregiving is Loss

Always keep a sense of humor, and remember to stay positive!






A common misunderstanding about grief is that it is only a reaction to death. But grief is a far broader concept. Grief results from a reaction to loss—any loss—not just one related to death. It is a reaction not only to an expected loss but to all the losses—past, present and future—that are encountered in an experience of illness or disability.

Grief is a constant companion on the caregiving journey. Caregiving becomes the process whereby one must continually adapt to losses. There can be many losses in caregiving for the loved one and the caregiver.  Some of these losses are tangible and some are not.

Loved One’s Losses: 

Hopes/dreams   

Plans/Goals      

Body Image            

Security 

Career/income                 

Independence                      

Intimacy 

Friends

Caregiver's Losses:

Hopes/dreams   

Plans/Goals      

Body Image            

Security 

Career/income                 

Independence                      

Intimacy 

Friends  

The list above shows that the loved one AND the caregiver are losing many of the same things (especially if the caregiver is a spouse). Loss is inherent in the caregiving experience, so is grief. Grief is experienced by everyone involved—loved ones, caregivers, family members, and friends. Caregivers and Loved Ones must go through the processes of grief over and over again as each loss occurs.

Types of support will be different at different periods in the caregiving experience, but each stage of grieving will need to be acknowledged and dealt with, for both the caregiver AND the loved one. The caregiver often must put aside her own grief and help the loved one through theirs. But, a word of warning to the caregiver; don’t forget to go back and address your own grief or you will not be equipped to care for your loved one properly.

The Stages of Grief:

1. Denial (Some loved ones will live in a constant and permanent state of denial Be direct and honest, but don’t expect an “Aha” moment right away).
2. Anger (Sometimes brought on by other emotions; frustration, resentment, fear. Let them vent).
3. Bargaining (Respond with, “wouldn’t that be great” or “We’ll help any way we can.” Do not try and reason).
4. Depression (Listen to the pain, empathize with sadness and share tears—don’t try and fix it!).
5. Acceptance (Peaceful resignation. Confirm and agree).

Caregivers and loved ones alike will bounce back and forth between these 5 stages often; sometimes even several within a single day. You are not strange or unusual because you are feeling a multitude of emotions. Each person has his or her own way of coping and their own time period for getting back to normalcy.

Adapted from Grief, Loss, and Caregiving by Kenneth J. Doka with additional editing by Lauri Dilbeck 7/4/14

Checklist for the Grieving

A friend of my daughter's recently lost her grandmother. She was so overwhelmed at this situation (she is preparing to bury her father as well), my daughter and I wanted to help her along with a list of things that should be done. 

The following is the list we came up with. I hope it will allay some of the pressure when you lose a loved one of your own. It's difficult enough to lose someone you love, let alone continue to take care of all the things for the living. I've included contacts for businesses in the Santa Clara County, but you can change that if you're dealing with another area.

Be sure to delegate when you can. Anyone can make calls for you, arrange a service, or run errands to pick up death certificates or information. Don't feel you need to do this all by yourself. God gave each person special gifts. Allow your friends and family members to use their gifts to help out. It will make everyone feel they've done something useful if you let them help.

1. Determine what will be done with the body.

a.      Willed Body Program – San Francisco will pick up your loved one.

Willed Body Program

University of CA, San Francisco

Dept. of Anatomy AC-14

San Francisco, CA 94143-0902

1-415-476-1981 (M-F, 8am to 5pm)

1-415-476-9000 (weekends and holidays)

b.      Cremation – Call the funeral parlor of your choice (Lima is the highest rated in this area).

Lima Family Santa Clara Mortuary

(Any time of the day or night)

466 So. Winchester Blvd.

Santa Clara, CA

408-296-2977

c.       Funeral – See “b” above.

                                     i.  Have in mind whether you will have a graveside service, Memorial Service, wake, funeral with open casket, etc.

2.  Start the process for the death certificates.

a.   Make sure the decedent’s doctor (or county coroner) has signed off on the death certificate. If not, encourage him or her to fill it out quickly.

b.   It will be necessary to get several extra copies of the death certificate (other than the one that will automatically be prepared for the County Recorder) in order to meet certain obligations. There will be a charge for these (see below).

c.   Once the death certificate is ready, the State Curator will call and let you know. If they don’t call you within a week, contact them to find out if they've received the paperwork. Try and hurry them along. You will probably need between 8 and 10 Death Certificates. They must be picked up at the Santa Clara Vital Records Office. (As of February 2014 they are $16 each).

Vital Records Office

976 Lenzen Avenue, Suite 1300

San Jose, CA 95126

408-885-2010

www.vitalrecords@phd.sccgov.org

d.   You should send original death certificates to each of the following (along with written notification). Be sure and send certificates for Life Insurance and/or Social Security office Certified so you get back a receipt. Always create a paper trail.

•     Social Security Office (include ss# of deceased).

Social Security Office

Room 244, 2^nd Floor

280 S. First Street

San Jose, CA 95113

1-800-772-1213

www.socialsecurityhop.com

• The Deceased’s Bank (See #9 below)
• Company Pension Office
• Financial Manager
• Mortgage Office
• All Life Insurance companies
• Medicare office
• Car or other loan carrier

3.  Notify the apartment complex or retirement home if applicable.

4.  Notify all friends and family (making a list is helpful).

5.  Notify the Executor of the will.

6.  Notify all doctors and medical professionals of the deceased, and cancel all pending doctor appointments.

7.  Notify car, medical and rental insurance companies.

8.  Notify medical suppliers to pick up oxygen, wheelchairs, etc. that are on loan or rent.

9.  Notify the decedent’s church.

10. Notify credit cards and other accounts such as utility company, bank cards, etc. 
Note: if you are a signer on the bank account, wait to discontinue the debit card and/or account as bills will continue to come in up to one year after your loved one's passing. You may also want to keep garbage and phone connected until you are able to clean out the residence of the deceased.

11. Determine whether the deceased would have wanted a funeral or Memorial Service.

a.      Contact the church or funeral parlor you want to use and reserve a date

                                     i.  When choosing a date, keep in mind those coming from out of town or working.

                                     ii. Enlist help from friends and family members, especially if you are going to do a photo montage, program, etc.

12.  Determine who is a signer on the account. Have the additional signer clean out the safety deposit box and send it to the Executor. In addition, be sure the Executor has access to all financial records and other monies.

13.  Write an obituary,

a.      The easiest way is to go online to www.bayareaobits.com.

                                     i.  This will be printed in all local papers

                                     ii.  They will walk you through the process

                                     iii. You will be able to see the cost before you decide

Note: This is not inexpensive! It can range from $600 to $3000

I should emphasize the importance of following up on all calls you make. Keep track of when you called, with whom you talked, and dates and times. If you don’t hear back, follow up in a couple of weeks. It sometimes takes several months for any automatic payments to stop, so be prepared to ask for money back if it’s been taken out after the loved one’s death. In reverse, there may be automatic deposits that continue to get put into the deceased accounts. Be prepared to pay those back.

Don't rush into cleaning out the residence of your loved one, unless for you this is therapy. Gauge yourself and how you're feeling. No need to hurry into anything. Don’t forget to take time to grieve. Take time for yourself to relax and go out with friends to get your mind off all of the “to-do’s”.

Are You Prepared?

Lately, I've been preparing for the inevitable--full-time caregiving. Constant days with no breaks off for shopping, meeting a friend for lunch, or attending a movie with my girls. We're not there yet, but I feel we are fast approaching, so I have been checking into all possibilities while I can.

I called my Long Term Disability (LTD) representative a couple weeks ago, to see if there was a clause in our policy that would help pay for respite help for me (and Jamey). He told me I'd need to contact our insurance or care agent.

Hmmmm. I wasn't sure what that meant, but I did some research and found out that there is a big difference between LTD and Long Term Care (LTC). I thought they were the same thing, but boy was I mistaken! It's too late for us the get LTC because Jamey already has an existing medical problem (they can deny you for this kind of insurance), but hopefully it's not too late for you! I've re-printed an article explaining the differences between LTD and LTC, written by a friend of ours who provides both. He is the most knowledgeable on the subject, bar none.

Read the article posted under CAREGIVER INFO on the right side of this page. And please look into LTC before it's too late. You won't even notice the monthly payment and it will be so worth it in the long run!

I Feel Like I've Been Dive-bombed!

Have you ever observed a mother eagle as she teaches her eaglets how to fly?  Why does she teach them to fly? She teaches them so they won’t end up as a meal for a predator. So they will be able to be strong and fend for themselves. So they will learn to trust her.

She pushes one little eaglet to the edge of the nest and soars under the nest, then back up over the eaglet, letting out an enormous shriek to let him know it’s time. Then she swoops down and dive-bombs the eaglet out of the nest. As her little baby falls, he finds his wings.  One by one she does this to each of her babies. 

Sometimes, after a dive-bombing, the eaglet cannot find its wings! So the mother eagle simply spreads her wide wings, moves under the bird and catches it on her enormous feathers. Then, ever so gently she places the eaglet back on the edge of the nest, soars up and dive-bombs it again.

Do you ever feel like God is dive-bombing you? Over and over again?  He doesn’t do this to make you unhappy, to tease you, or cause you pain. He does it because He knows it will make you stronger.You may not think so at the moment--you just want to be safe inside the nest--but trusting in Him will make you stronger. Some day you will find your wings and be the person He wants and longs for you to be. 

Don’t let caregiving get the best of you. Find your wings! God is spreading out His enormous wings underneath you so when you fall (and you most surely will), He will be able to carry you back to the nest until He's ready to dive-bomb you again. He has only good in mind for you. He wants you to gain strength and trust His presence in your life. In the end, you will be so glad you were able to be there for your loved one. You will have precious memories that will always be with you; memories of sweetness, not bitterness.

Let the dive-bombing begin!

Fact vs Fiction: the Truth About Nursing Homes

Just found this wonderful website that will answer a lot of your questions about caregiving and provides great resources as well. Remember, just because you're a caregiver doesn't mean you can't also use help from places like Nursing Homes and Assisted Living Residences. Here is a little sampling...

Copied from www.CareConversations.org 6/26/2014

March 24, 2014

Let’s face the facts: There are a lot of people who don’t have an accurate understanding of skilled nursing care centers (which many call nursing homes). These misunderstandings can lead to harmful myths that may prevent families from seeking the help they need.

When considering care options, it’s important to separate fact from fiction. To start, let’s bust three of the most common myths about skilled nursing care centers: 

1. Myth: Nursing and post-acute care centers are like hospitals. Fact: While care centers do offer in-depth medical care, they are very different from hospitals. Care centers often feel more like homes or apartments. And, in addition to medical care, many centers offer social activities and recreation programs.
2. Myth: Care center patients never leave. Fact: On average, one in every four patients stays less than three months at a care center. Some stay only for a month to recover from an injury or illness.
3. Myth: Care centers are unreasonably expensive. Fact: The daily cost of a care center can be a fraction of the cost of a day in the hospital. Overall, care centers are one of the most affordable options for 24-hour, professional nursing and rehabilitative care.

To discover more facts about care centers, check out the Fact vs. Myth page on CareConversations.org.

Mornings with Jamey

I recently had to cut my hours to be home with Jamey in the mornings. He has the most difficulty before 2 P.M. It's a little scary to step out in faith about our finances. But, I do believe God will take care of all our needs, even if I'm a little apprehensive!

I have enjoyed our mornings together. It's a nice quiet time and he is usually able to converse a little in the A.M. While I don't really like to cook (If I could "sew" a meal, I'd do much better), I have been faithful to making him a good hot breakfast. He appreciates it (I think) and I feel better about starting his day out with something nourishing. I can usually get myself ready for work and get the kitchen cleaned up before I leave, so that makes me feel better about the day (for some reason I cannot compartmentalize a clean house from my emotional status.So having the dishes done makes me feel better all day long. Weird, huh?).

Today I made him an egg, bacon and cheese burrito with a little salsa (he hates tomatoes but he will tolerate mild salsa. I would love some suggestions for quick, easy, and nutritious breakfasts. LOL Guess that's a pretty tall order! Well, I'll take 1 of the 2 if you can't give me all 3! Feel free to suggest things. My biggest challenge where that's concerned is that he won't eat vegetables. Try as I might, I haven't been successful getting the green things down his throat. I resorted to buying Fusion Juice by V-8. It has a helping of vegetables in each serving but it tastes like fruit. That, he'll drink. Sometimes I hide veggies in stuff but he always finds them. What's a caregiver to do?!

I've added new pages off to the right side of the blog above HOME. You can click on the links and they take you to the title of your choice. This allows me to be a little more intimate with you but also give you the practical info you need to do your job more effectively.

Talk to you soon!

Tips for the Caregiver

t Don’t enable. Do help or assist

One of the biggest lessons I’ve learned while caregiving, is that there’s a fine line between assisting and enabling. Knowing what your Loved One CAN or CANNOT do, is very important, so speaking with them about what their limitations are, is crucial.

t Know what to expect of your future

If you know what is coming (to a certain extent) you’re able to deal logically with it when it rears its ugly head. It will also allow you to construct a time-line of sorts that may assist you in your caregiving walk.

t Develop a tough skin

 I know many of you will come up against frustration that exhibits itself as anger. While some Loved Ones might expect you to do everything for them, it’s more likely they will be offended if you do something for them they feel they can still do. Your Loved One might lash out. While they may not be trying to hurt your feelings, you’re the one who is the most convenient, so you’re the one who will get the fury. Try not to be offended easily! It can be very discouraging, but hang in there. You are doing them a great service even if they don’t realize it.

t Try to Put Yourself in Your Loved One's place
Can you imagine having your independence stripped away? Can you visualize having to give up your favorite hobbies, your precious past-times or your ability to enjoy your family. These are some of the things your Loved One may be experiencing. If you can put yourself in their shoes for just a moment, you might realize the huge loss they're feeling. In fact, they are grieving...grieving for the loss of something new, almost every day.That's a very big deal!

t Assume the role of a parent

A lot of times, you must assume the role of a parent with your Loved One. It is difficult for your Loved Ones to step back and let you lead, but it is best for them. You will have to make the hard decisions for them, but whether or not they appreciate it in the long run, you will know you had their best in mind. You will have to be firm but loving and that is sometimes very hard to do. But, remember how your parent(s) were when you were growing up. In order to keep you safe, they had to make tough choices that you didn’t necessarily like. But, because they made those choices, you were safe and lived to adulthood. Now you must make choices for your Loved One—choices he or she may not like.

t Plan Ahead

If you have the luxury of getting paperwork done ahead of time (i.e., Power of Attorney, signer on bank accounts, etc.) do so as quickly as possible. It will be very helpful to have all of that done so when the time comes to step into that role, you won’t have to rush and try to take care of it while your Loved One is failing.

t Seek Advice/Help

Don’t be afraid to ask for help, whether physical or emotional. Professional help can be a huge comfort while dealing with this new position. When someone asks what they can do, give them something…don’t wait for them to change their minds. Keep a list in your pocket or purse so when a friend asks how they can help, you can pull out the list and give them a choice of what they’d like to do.