To Make a Submission to the Column, contact Ruth Perschbacher Price, Coordinator,  HOPE Behavioral Health Caregiver Wellness Program      Office: 682-2459 or HOPE: 828-681-2203      ruth [at] rutheprice.com     email her directly Write To: HOPE Program, Park Ridge Hospital,                  P. O. Box 1569, Fletcher, NC 28732

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On This Page: Wife Worries about Husband's Care During Her Surgery
                           Daughter Worries Father’s Caregiving Is Affecting His Health
                           Asking for Help Is the Hard Part
                           Daughter Is Overwhelmed with Mother’s Requests 
                           Mother Fears Going to Bed at Night
                           Daughter Worries about Mother’s Sudden Memory Changes

Dear Ruth,

I’ve been caring for my husband who has many physical problems (heart failure, high blood pressure, diabetes, and weakness to name a few) for three years.  The past month I found out that I need to have hip surgery.  The doctor says if I put this off any longer, I may become completely disabled.  I have never left my husband alone since his illness and he begs me not to leave him.   I’m afraid to leave him in the care of others and I promised never to put him in a nursing home. 

        Worried

Dear Worried,

One of the hardest things a caregiver faces is making difficult choices about how to provide for a loved one’s care without jeopardizing one’s own health.  This difficulty is compounded by the fact that the person you have relied on in the past to help you make hard choices is the same person who is now dependent on you.  When people are ill for long periods, their worlds shrink and out of self-preservation, they become more focused on themselves and less on others. 

As the caregiver, it is critical that you make the best decision for both you and your husband.  This means taking care of your own health even when your husband balks at you leaving him in the care of others.  If you do not make a decision for your own well-being, you put yourself and your husband at risk.  You risk losing your health and your husband risks losing his main caregiver.  Once you’ve made a firm decision to have someone cover for you while you go to the hospital, share your choice with your husband and let him know that having others care for him is not negotiable.   You can now involve your husband in choosing who provides his care while you are away.  (If he continues to resist, be prepared to make this decision without him as well.)

Begin researching (if possible, with your husband’s input) both in-home providers of care and facilities that offer short-term respite care.  If you choose in-home care providers, schedule someone before you go to the hospital so that both you and your husband can get to know them and become confident in their abilities before you are hospitalized.  If you choose a short admission to an assisted living or nursing home facility, remind you husband that it is not a permanent change and he may actually find that he will enjoy the activities available along with the socialization.

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Dear Ruth,

 I’m concerned that my father is wearing himself out caring for my mother who has multiple physical problems and is very demanding by nature.  He tells me he’s just fine and that I worry too much.  He used to be a great athlete and has always taken good care of his physical health.  I know he hasn’t exercised in months, he looks pale, and moves as if it is painful.  Do I worry too much or is there a serious concern? 

Father Says I’m a Worry Wart 

 
Dear Worried,

There is no doubt that caregiving can impact the health of the caregiver.  Your observations of your father’s change in lifestyle and his physical appearance are reasons for concern.  Consider what a recent study found about the stress of having a sick spouse leading not just to poor health, but an earlier death. 

A study compiled by Harvard Medical School and the University of Pennsylvania researchers looked at more than 500,000 couples.  It found that the trauma of caring for a spouse with a debilitating illness can be life-threatening.  The greatest risk of death for a partner occurs within 30 days of a spouse entering a hospital. 

For the husband of a newly ill or injured woman, the risk of death within that time period increases 53 percent.  For a wife, the risk increase 61 percent.  However, overall the study found that men are more vulnerable than women.  Perhaps this is because, as other studies have shown, men benefit most from the marriage bond and therefore men have the most to lose when their partners become ill. 

The health and well-being of one spouse is interconnected with that of the other.  While your father is resistant to your concerns, it  is important that you continue to share them with him.  Consider how your father has coped with difficult situations in the past and what kind of advice he might give you in the same situation.  As you have conversations with him, honor his independence and abilities while talking about the value of his relationship with his wife and how aspects of that relationship are changing. 

Give him opportunities to express how he is feeling.  If this is not easy for him, you might simply want to start scheduling time alone with him for activities he enjoys.  This might mean arranging for a friend or a professional to come by the house to care for your mother.  Letting your father know that you need time with him might give him a reason to allow someone else to take over for a few hours.  Over time he may be more receptive to considering help with his wife’s care and take time to maintain his own wellness. 

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Dear Ruth,

 I’m an only child taking care of both parents.  My mother has long been the take-charge person in our family and now she is becoming forgetful.  When my father corrects her, she gets angry.  My mother has lived by the philosophy that family takes care of family and all we need is each other.  I want to get my mother’s mental functioning assessed by someone who specializes in memory disorders, but she is opposed to asking anyone for help.  My father won’t take a stand. 

I feel I should be able to handle this by myself yet I also feel like I can’t cope without help and that makes me feel guilty.  My mother’s words about keeping problems within the family keep me from taking action. 

Need Help, but Afraid to Ask 

Dear Need Help,

You are not alone in being afraid to ask for help.  One of the most difficult things for caregivers to do is to seek help.  Many believe that asking for assistance reflects poorly on a person’s abilities - that simply asking is a confession of failure.  There is another way to think about what it means to ask for help. 

Asking for assistance means taking a risk and taking risks requires courage and in the situation of a caregiver it reflects a desire to provide the best care possible.  You seek information about your mother’s mental condition so that you can be a better caregiver and she can have better quality of life.  This is not a failure, this is the thinking of a thoughtful caregiver. 

Even in families that are quite independent, services outside the family are often sought, for example, mechanics to fix cars, grocery stores to provide food, doctors to fix broken legs, etc.  People have always depended on each other for goods or skills they did not possess.  In addition to her known philosophy about not asking for help, your mother may have fears about going to a clinic.  This fear is understandable. 

There are several options for you to consider.  You may want to contact MemoryCare in Asheville (771-2219) and set up an appointment to discuss your situation.  They often counsel family members and may be able to offer suggestions about how to get your mother to the clinic.  Asking your father to go with you might give him the information he needs to back you up in getting your mother to agree to an appointment. 

If your mother has confidence in her primary care physician, you may contact the physician perhaps by letter and ask him/her to recommend to your mother that she be assessed at the clinic.  Attending a program for caregivers such as the one at Park Ridge Hospital would give you an opportunity to share your situation with others who are in similar circumstances. 

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Dear Ruth,

My mother recently moved to this area from Illinois.  She currently lives in a retirement center.  She has made few friends since moving and she expects my husband and me to visit her every day and call her twice a day.  My mother is able to take care of herself and she seems in good health for her age (79). 

I work full-time and my husband is semiretired; however, he has health problems and though he is usually very patient, he is getting more and more frustrated with my mother’s demands.  I have always found it difficult to say no to my mother, but I find that I too am getting very impatient.  Sometimes I lie to her about not feeling well just to avoid talking with her or making visits.  I always feel guilty about lying to her.  I love my mother, but she’s driving me crazy. 

Losing It

Dear Losing It,

While steel and diamonds are often considered among the strongest substances in the world, a mother’s will is by far the most powerful.  The influence of a mother lasts a lifetime as clearly evidenced in your letter.  However, as adult daughters, we do have choices about how we respond.  Without making some changes, resentment is likely to take over your feelings of love. 

You need to determine and then communicate your priorities.  For example, perhaps you could agree to call your mother once a day at a time convenient for you.  Trim your visits to your mother to two or three times weekly and encourage her to make friends.  Set a time for you and your husband to go out to dinner at least once a week and do not allow this time to be interrupted. 

Finally, don’t forget about taking care of yourself.  Be sure you exercise regularly and schedule a weekly lunch with a good friend.   It won’t be easy “saying no” to your mother.  When you were a little girl, this would not have been a viable option.  But now you are an adult and it’s time to start. 

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Dear Ruth,

My mom has multi-infarct dementia.  She is being cared for at home by a live-in caregiver and other family members.  Generally, she is content with her routine.  She recognizes family, eats well, and ambulates with assistance. 

Recently she has developed an aversion to going to bed. She reports seeing dead bodies in her room and states it is “the room for dead people”.  We moved her bed to the dining room several months ago so she wouldn’t have to use the stairs.  Her dog used to sleep with her, but he stopped when we got a hospital bed.  The bed sits higher off the floor than her previous bed.  We recently started covering the rails on the bed so she wouldn’t see them. 

When she goes to bed she generally goes to sleep relatively quickly and sleeps well. 

Wanting Mom to Feel Safe at Night

Dear Wanting Mom to Feel Safe,

 Let me compliment you on the clear information you provided and for recognizing the positives in your mom’s life such as the fact that she sleeps well once she gets into bed.  From the situation you describe, your mom is experiencing fear & loneliness associated with her new bedroom.  Essentially you want to make bedtime safe by creating a ritual of comforting activities.  Here are some ideas to try:

  *Consider lowering your mom’s bed and removing the side rails.  A high hospital bed with side rails can be a danger to many older adults because people get up in the middle of the night and climb over the rails which can lead to falls.  In your mother’s case, the side rails may be adding to her fear.  If lowering the bed is feasible, place attached carpet (no throw rugs) and/or thick, bed-length fall pads (check with a medical supply store) next to the bed to decrease the chance of a serious fall.  If the bed can be lowered, the dog is more likely to sleep with her, providing some of the comfort she needs.  Before lowering the bed or removing the side rails, consult with your mother’s physician. 

  *As she readies for bed, sing or play soft music that is familiar to her. 

  *Use comforting, affirming statements especially when she mentions the dead bodies.  For example say, “I don’t see the dead bodies, but I am here to protect you and no one will harm you”. 

   *Use physical touch such as hand-holding, gentle back massage, or rubbing her feet.  A warm bath before bed may also increase her sense of relaxation. 

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Dear Ruth,

Up until a week ago, I considered my mother not only doing physically well for her age (87), but that she was also amazingly mentally sharp.  She could quote information about current events and remember politicians’ names better than my friends who are half her age. 

Then I began noticing her mind wandering in the middle of a conversation.  One afternoon when I visited her, she had just gotten out of bed and didn’t seem to recognize me.  At times she hasn’t been able to recall whether she has been to the grocery store.  Once she even forgot that she had bought a new car and called me to ask whose car was in her garage.  Could this be Alzheimer’s disease? 

Hoping Mom’s Just Having a Few Bad Weeks

 
Dear Hoping,

Your mother needs to be seen by a physician as soon as possible.  A careful physical exam is the first place to start with a sudden onset of thinking difficulties such as the situation you describe.  It is possible that your mother might be suffering from a condition called “delirium”.  Delirium is an acute and reversible state of thinking impairment that can have many different causes such as urinary tract infections, oncoming flu, hypoglycemia (low blood sugar levels), and other conditions related to acute illnesses. 

Medications are often involved in the types of acute symptoms you describe.  Find out if your mother has started any new medications.  Include in your research any over–the-counter drugs as well as vitamins or other changes she has made in her eating habits in the last few weeks. 

Some of the symptoms related to delirium are a sudden onset of impaired orientation and poor recent memory recall.  Symptoms are often worse at twilight or on awakening.  Alertness fluctuates and the person may be either lethargic or hypervigilant.  Thinking is disorganized, distorted, and/or fragmented.  Incoherent speech which is either slow or accelerated may be present.  In some cases a person might suffer from delusions or hallucinations.  Normal sleep patterns can be disturbed.

You have described many of these symptoms.  Schedule an appointment with your mother’s doctor and ask your mother if you can go along.  It will be helpful to your mother and to the physician to have your observations included in the assessment.

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