Making Things Easier

I’ve learned that if I make things easier for my loved ones, I gain benefits, too. Some of these things are very simple but can make a world of difference. Not only do the “helps” prolong my loved one’s independence, but these things can free up some of my time as a caregiver, too.

General

Plastic Stencils make writing easier

1. If writing is difficult for your loved one, provide a plastic lettering guide (template) or stencil. Or purchase software that will write when they speak. (Unfortunately, Jamey cannot use these types of stencils, but he is still able to use a keyboard when his meds are working). Gently push your loved one to do things that are out of their comfort zone. It will help stretch them and keep their brains healthy!
2. Keep a balance between exercise, medication, good nutrition, ample sleep, social life and a good attitude (good advice for both caregiver and loved one).
3. Always check to be sure the pharmacist has given you the correct prescription. Be sure you have enough medication before a weekend.
4. Make sure all the chairs in the home are high enough that your loved one doesn’t have to risk their safety trying to get out of them. Note: Recliners can be purchased in larger sizes with higher than standard seats to make getting up and out a lot easier.  A recliner can also be slept in when your loved one is restless. Recliners and other seating can be custom made to address your loved one’s challenges. There are also motorized chairs and recliners available for getting your loved one up with minimal strain.
5. Remove all area or throw rugs to prevent tripping hazards.
6. If there is a pet that can get underfoot, think of a way to harness the little member of the family. Tripping over a pet is very common and can be disastrous to your loved one.
7. If your loved one is in a wheelchair, put bumpers on doorways and/or corners of walls to prevent injury to loved one.
8. If necessary, install an intercom system or purchase a portable intercom so when someone comes to the door, it is easy to answer, even if you're in the back room assisting your loved one.

Sleeping

9. Put satin sheets on the bed to help your loved one turn more easily, or to help you turn them. (See the link at the right for reasonable Satin Sheets).
10. Try different shapes and sizes of pillows if sleeping is a problem.  Sometimes lying on top of the covers in comfortable clothing can help change the routine enough to ensure sleep (be sure your loved one doesn’t get chilled on top of the covers; sweatpants and socks are a good idea).
11. CDs that make nature sounds (i.e., rain drops, waterfalls, ocean, rain forest) aid in drifting to sleep. The sound of a fan blowing can accomplish the same thing.
12. Provide a wedge-pillow to prop up your loved one while he is resting. Or, purchase a motorized bed that will provide foot and head positioning.
13. Get rid of foot cramps by rubbing against the direction of the cramp. Heat and massage will often help. And, if your loved one can stand, keep a smooth stone handy to walk over or to rub onto the cramping area.



Draw sheets can aid in turning your loved one in bed

14. When you make the bed, be sure to add a draw sheet. It will help keep soiled sheets from touching your loved one's skin, and aid in turning too. Note: if you order satin sheets to help your loved one turn, order an extra flat sheet to use as a draw sheet, that way it won't defeat your purpose.

Toileting/Grooming

15. Buy an electric toothbrush for your loved one.
16. Buy an electric shaver for your loved one.
17. Install safety bars throughout the home, in areas that your loved one will need extra help.
18. Place a seat in the shower area and be sure there are safety bars in all bathroom and tub areas.
19. Install ADA toilets, or provide a portable commode.
20. For female loved ones; fix hair and do whatever makeup is preferred daily. For males, shave and fix hair every day. This will add to a positive feeling and good attitude.

Traveling

21. Go Places…Don’t Hibernate!
22. A plastic bag on the car seat helps your loved one slide in and out of the vehicle.
23. Add a ramp for getting in and out of the house (to avoid steps if they are a problem).
24. If a planned trip is long and your loved one an has issue with incontinence, take along a urinal, panty-liners, or adult diapers.

Exercise

25. Exercise class for both you and your loved one, provides exercise and socialization and contributes to maintaining mobility and a healthy mental outlook.
26. Try a massage periodically (you or loved one).
27. Swimming or stretching in the shallow end of a warm pool is wonderful exercise.
28. Exercising the mind is also good. Read to your loved one, or have them read to you, if they are able.
29. Sing a song with your loved one. Alzheimer’s patients love to reminisce and often have trouble remembering things. But singing old familiar songs can bring back wonderful memories!

All of these things will help you maintain a positive attitude, and hopefully will do the same for your loved one. We must walk a fine line between allowing our loved one independence and taking over where they need help. It will always be a challenge, but the more you do it, the easier it will be! Remember to always ask a medical professional about exercise and lifting.

Did You Know?

As we age we swallow less often which can create excess saliva and drooling (this is more prevalent in Parkinson’s patients). If your loved one is on medication which causes dry mouth it usually isn’t a problem. But if not, give your loved one lemon drops, peppermints, or sugarless gum to chew. This will lead them to swallow more often.

Our stomachs shrink as we get older and therefore we don’t want to eat as much. As long as your loved one isn’t losing weight, there is probably no concern. But, if weight loss is occurring, keep on hand nutrition shakes, protein boosters and fruit for snacking.

Older people tend to drink far less than they should, so it is often a challenge to get your loved one to drink more water. Keep a thermal cup, with a top on it, filled with cold water (or room temp if that is preferred) and set it next to your loved one. As you pass by, pick up the container occasionally. You should be able to feel the difference in the cup’s weight if your loved one is drinking like he should. If not, gentle reminders throughout the day should be sufficient.

If your loved one is going through chemo, they will often lose their taste sensation. Trying to get someone to eat when all they can taste is “cardboard” is very difficult. I know I wouldn’t want to eat if that were the case, and I LOVE food! Find something they can taste—for my mother is was chocolate—and ask the doctor if they can have it whenever they want. Knowing there is something that tastes good coming later, can sometimes encourage eating the “cardboard” first. Yes, it is actually a form of bribery, but all is fair in love and caregiving! 

Men struggle with Dysphagia far more often than do women. Dysphagia is a condition wherein the muscles and nerves that help move food through the throat and esophagus are not working right. It often exhibits itself as choking or trouble swallowing. Sometimes this condition can prevent food from reaching the stomach or even cause food particles to go down into the lungs, ultimately causing pneumonia. There is a special thickener used for Dysphagia patients which encourages the food to go where it is supposed to go and keep the loved one from choking. Ask your loved one’s doctor if you suspect he is suffering from this.

Skin becomes more fragile as we age. Our skin can become almost translucent and paper thin. Always keep soothing hand cream applied to your loved one’s skin (arms and hands especially). And avoid having your loved one do anything that might tear or damage the fragile skin.

Skin can also become discolored and show prominent bruising (in particular for Coumadin patients). Keep track of the bruising and call the doctor if it increases abnormally or moves to other areas.

Remember, these are just suggestions. Always consult your loved one's doctor for unusual weight loss or gain, consumption issues, and all other health iissues. This blog is for reference only (see disclaimer below).

What Caregivers Need From Doctors

As a caregiver, I find these things helpful to get me through doctor appointments and occasional reactions to medication. Be sure to keep a good record of everything your loved one is taking and everything the doctors tell you, and it will make your life easier!

1. Before Hand: If your loved one has personal or specific issues to be told to the doctor ahead of time, make an appointment on your own to take care of this. My daughter works in a pain clinic and she has caregivers come in from time to time to meet with the doctor saying, “My father wants to be talked to. Please look him in the eye and deal with him, not me, when we’re in the appointment. I will get all of the information I need, but it is very painful for him to think he is not being addressed about his own health.” If that is the case, be sure and address it without the loved one in the room, not at the loved one's scheduled appointment. It will be appreciated by the doctor as well.

2.  2. Communicate:  Take notes during doctor visits and don’t hesitate to ask questions if you don’t understand something.  I use one of those “Composition Books” that college students use for tests. I keep all the contact info for each doctor in there and write the dates of visits and what each doctor said at the visit. Make sure that whatever you’ve talked about is clear before heading out the door. It’s OK to have the doctor repeat what he’s said, even if it takes several times before you understand it. You’re paying for your visit just like the guy before you did—the one that went over time and made you wait.

3. Get Contact Numbers: Be sure you have all the contact numbers where your doctor can be reached during weekdays and on weekends or holidays. Also, make sure you know what to do when your doctor or on-call doctor cannot be reached.

4. Questions: Don’t let the doctor make you feel like you’ve asked a stupid or inappropriate question. If you are feeling this way consistently, talk to the doctor about it (take him or her aside). It is always better to ask a question than to assume anything. It’s always OK to get a second opinion, or for that matter, a new doctor. Not everyone is a good fit. Don’t worry about hurting the doctor’s feelings, but be sure it is okay with your loved one, to switch doctors.

5. Emergencies: Get clarification on what constitutes an emergency and what does not. Make sure you know what to do and whom to notify in the case of such. Always have a complete list of medications your loved one is taking (dosages, frequency, etc.) on hand whether calling emergency, talking to the doctor, or inquiring from an Advice Nurse.

6. Body Condition: Understand your loved one’s current physical and emotional condition at every doctor visit. If need be, have the doctor describe it in layman’s terms. Don’t assume that everything is as it was the last visit.

7. Anticipated Changes: Be sure you understand expected and anticipated changes in your loved one and his/her disease. This will alleviate needless worry and/or concern.

8. Medication: Always request prescription refills before the weekend so you don’t run out! (It is helpful to type up a list of your loved one’s medications, when he/she takes them, a calendar of all surgeries and/or hospitalizations so that at a glance an emergency provider will know exactly how to help your loved on—see #5 above).

Always find out:

a.       When the medications should be taken (with meals, first thing in morning, at bedtime, etc.

b.      How long medication should be taken (are refills necessary?)

c.       What are possible side effects and what should you do about them

d.      About which side effects should you notify the doctor?

e.       Does the medication interact with other meds, either prescription or nonprescription?

f.        Should the person avoid certain foods? (protein, grapefruit, cranberries)

g.       Do any of the medications have long-term effects?

h.       Does the medication have warnings regarding children, older people, or people with substance abuse?

i.         Does medication come in various forms? (i.e., trouble swallowing pills vs. liquid meds, etc.)

j.        Can you get the medication without a child-proof cap? (for those with arthritis or neurological disorders) or in large print

Be your loved one’s advocate. Do your research and ask questions!

9. Records/Journals: Find out what kinds of records you should be keeping, including notes on bowel and bladder function, sleep, presence of pain or any other identifiers. Records help the caregiver relay information to the doctor when necessary.  Don’t rely on your memory to help you with this—always write it down. (This can go in the Essay Book along with all other notes).

10. Resources: Ask the doctor for local resources that may assist you and your loved one, including information about medical supplies, medical equipment, home-health agencies and caregiver support classes or groups.

11. Documents: Have the doctor help you prepare (or at least assist you to get started) on any paperwork regarding end-of-life care, including a will, durable power of attorney for health care and orders regarding resuscitation.  Do these BEFORE you need them so when the time comes you will not be dealing with this added stress and emotional task. (You may want to take care of these matters at another time so your loved one doesn’t have to be part of it. However, you don’t want to appear secretive, either.) Be sensitive.

12. Hospice:  If your loved one has a terminal or incurable illness, get a list of services and support for your loved one’s final days/hours. Many of these services are available at no cost to patients with a life expectancy of six months or less who opt for palliative rather than curative therapies. I've had experience with Vitas and I can recommend them for all kinds of end of life care (www.vitas.com).

13. Follow-Up: Talk to the doctor frequently, either at your scheduled visits or in between when questions come up. Don’t feel guilty for contacting the doctor—that’s what he/she is there for. When you’ve left a message for the health care professional and they haven’t gotten back to you within a reasonable time, call again.

Organization is key to caregiving. You must keep good records not only so you have a paper trail, but in order to find the information you need in a timely manner.

Please see the listing at right for Medication Chart to help you keep your loved one's medications organized.

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!