A Guide to Caring for Aging Family Members

Archive for August, 2014

People cope with death in many different ways – The Patriot-News

People cope with death in many different ways – The Patriot-News.

This column, “God Squad” by Rabbi Marc Gellman examines the moral issues of being honest about terminal illness.  Personally, I tend to look at life in terms of “gray areas” rather than black and white.  But Rabbi Gellman was clear in his statements:  rabbi

  1. The fundamental moral belief about illness is that knowledge conveyed by a doctor belongs to the patient and to no one else.
  2. As long as therapy is possible, patients ought to take advantage of any clinically proven therapy, however, when therapy is no longer possible it is the patient’s right–and it’s also the right thing to do –to let the end come when it comes.  (See my June 29 post “My Counterpart:  a Go-To Granny)
  3. To choose NOT to tell someone they are dying is a paternalistic attitude that is not morally justifiable or spiritually sound.  To be deprived of this knowledge is to be deprived of the ability to say goodbye to life and those we love.

I feel that this article will be very reassuring to people who are struggling, or have struggled, with the issue of death and dying.  It was also very validating to me, since my life was so profoundly impacted secret-keeping, when my father was lied to about his terminal illness during the late 50’s and early 60’s.  (See my August 14 post “Different Perspectives on Grief).

You may want to revisit some of my other older posts about this difficult topic:

The Conversation Project
Hospice: When Should They Get Involved?
Burdening Our Kids
A Controversial Issue Worthy of Comments
Again, Quality vs. Quantity of Life
It Pays to Prepare

 

 

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Canes: Aging and Vanity

THIS.....

THIS…..

NOT THIS

NOT THIS

 

 

Originally posted on Intentional Caregiver:  http://www.intentionalcaregiver.com

Confessions of a New Caregiver

August 13, 2014 by Andrea Frayser:  Doctor of Naturopathy, student of Herbal Pharmacology and Holistic Nutrition and an award winning authority on plant based personal care and wellness. She is the author of “The Ultimate Juice Fasting Detox Plan”, “The Pennywize Vegetarian: The “How-to” Guide For Better Eating on a Budget”, and Deliciously Satisfying Vegetarian Recipes”. Andrea lives in Hagerstown, MD with her husband and three children where she enjoys the arts, nature, shopping and cooking for her friends and family.

I have to make a confession. This has been the hardest post for me to write. I have sat down, time and again to put the words together and they just wouldn’t come. It has taken me weeks of prayer, of introspection and a swift kick in the butt to finally get this done. I guess the kick dislodged the words, so here we go…

I use a cane. (Even typing that statement pulled at my heart.) Please understand that I have been fighting this inevitability for several years. I would rather rely on my husband, children and friends to prop me up, and yes, sometimes pick me up, as long as I did not have to use a cane.

I understand the benefits of using the device in my mind, and over the years, I have had many conversations with friends and clients convincing them to use their canes. But when it came down to me getting one- oh boy- all of that good sense just went to the wayside.

To me, the cane represented weakness, old age, and an inability to care for my family. Therefore when necessity prevailed and the need for the cane became apparent, it felt like accepting this device would also mean that I had to accept being weak, losing my vitality and not being able to do the thing I love the most- caring for my family. I really felt that using the cane would change people’s view of me from a fortress of strength and stability to a pile of dust, and I was not ready to accept that reality shift.

I needed some serious reinforcements to support me in this decision. My husband, who also happens to be my best friend, went with me to pick it out. After trying out several models I found one that suited me. It was young looking, sparkly and had a comfort grip handle. I used it to get to the car, where I proceeded to break down and cry. Partially because it was so much easier for me to get from the sidewalk to the car and I had less pain. Admitting that seemed like I was choosing my comfort over my family.

We went to Sam’s Club to pick up a few things, and my husband asked me if I wanted to “take ‘er for a spin” inside Sam’s. I couldn’t do it. So he graciously went in, while I stayed in the car and watched the people go by (yes, and to cry some more). To get my mind off of my “problem” I went on Facebook to see what was going on in other people’s lives. As I was looking down at my phone, a hand appeared through the window and a giant box of my favorite chocolates appeared, quickly followed by a kiss on the cheek. He went back into the store and shopped, leaving me time to dry my tears and think.

In my heart, I went back to holding my children’s hands when they were little to keep them safe. I realized that now that they are adults, we were still holding hands but they were doing it to keep ME safe. I also realized that my stubbornness in using the cane was keeping me dependent upon them and others, that in reality, they had slowly become my guardians and caregivers and that I was not really caring for their emotional health with my choice. By the time my husband had returned I had decided that I was going to try to make peace with this.

When we got home I decided to use my cane to walk to the door. My son saw me walking towards the house, he ran and opened the door, and said “Hey Mom, looking good!” (I cannot describe how good that felt.) When my daughters came to visit, they both ribbed me horribly (in my family that is a sign of acceptance and love), and I could sense the feeling of relief that came to them seeing me walk steadier (the jokes about no longer looking like a drunken sailor were also an indicator).

That night, when we sat down to read the bible and pray together, I asked them how they felt about my new accessory. They all agreed that they loved it because, it gave me freedom, and they would worry less about me because I had my “personal assistant” and that I could go back to being Mom again. Amazing how our own visions of ourselves can be so far off from what others really perceive.

I named my cane Whizzy- for two reasons. First it is because I can now “whiz” around from one place to another, without waiting for someone to steady me, and second as a reminder that “Wisdom is proved righteous by its works.” (Matthew 11:19) Every time I pick Whizzy up, I am reminded that it was the wisest choice, and that by using her, I am providing proof of Godly wisdom to myself and others- especially my children.

The response and support have been overwhelmingly positive. There are some who look at me with that look of: “why her?” The real question is: ”Why not me?” I deserve to be able to feel safe and secure, to reduce my physical pain, to not have to rely on people to keep me on my feet, (literally) and to have to dignity of being able to overcome my negative thinking and experience the emotional, physical and psychological freedom that comes with my lovely red cane- Whizzy.

My Comments:

My MIL disliked all forms of devices that she associated with getting older:  canes, walkers, wheelchairs and hearing aids (she could “hide” the incontinence products).  When she had to graduate from a cane to a walker, she chose the jazzy electric blue rolling model.  When it became unsafe for her to go to the senior center, and we brought up the subject of a wheelchair, she became upset saying, “Wouldn’t you be upset if someone said you needed a wheelchair?”  When I clarified that the model she would be using was a “transport chair” she said, “I would not have been upset if you had called it a transport chair!”  Her minister said, “Well, it is a chair and it does have wheels.”  So we started calling it a “transport chair,” per her preference.  She gained a measure of independence despite her vanity.

Barbara Matthews

Advocacy

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Home » Caregiver Support » Emotional Wellbeing » Questions » How to advocate for a loved one’s needs in

How to advocate for a loved one’s needs in a positive way?  advocating

rosie1 reports that her mother, who has dementia, is being transitioned into a nursing home full time. The director of the facility made the “suggestion” that the family is too “high maintenance.”  Because Rosie’s brother reported the remark to Rosie, she is examining her own behaviors and questioning why she may give the impression of being over-bearing.  She asks how she can build a positive relationship while continuing to advocate for her mother.

My response:

Advocacy is an important part of your responsibilities as a caregiver.  It’s a matter of striking the proper balance.  I have had experience as a caregiver advocate, and I write about the topic in my book, “What to Do about Mama?”

When my mother-in-law was in a nursing home for rehabilitation after a pelvic fracture, she would press her call button when she had to use the bathroom. (She had not yet been cleared to go to the bathroom alone.)  She would then wait and wait and wait, until she could wait no longer, and would then have to urinate or have a bowel movement in her diaper.

I spoke to the social worker about the issue and was told that my mother-in-law was so “quiet.”  My point exactly.  When a “quiet” person rings the bell because she has to go—you can count on the fact that she has to go.  Why should a mentally competent and continent woman have to suffer the degradation of soiling themselves?  I was told she would be put on a 15-minute watch, but I replied that was hardly necessary.  She just needed to be helped in a timely fashion when she pressed her call button to go to the bathroom (something she did not do often).

The need to be an advocate is not necessarily a criticism of the facility where a parent is placed.  It’s just that it is easy for something to slip by or for mistakes to be made, and caregivers must be on guard to prevent problems, misunderstandings, and omissions. To be an effective advocate, you need to educate yourself about different aspects of caregiving, health, care plans, and medication.

One helpful tool is to develop a personal profile to be posted in your loved one’s room that provides information about his or her personality, preferences, and interests.  (It’s a nice touch to include a picture.)  This gives staff more understanding of their charge as an individual and provides topics for conversation.  Personal Profiles personalize the individual to staff and are also great conversation starters.

Also, when placing your loved one in any type of living facility, get to know the staff and establish a positive relationship with them. No matter how good the facility is, there will be situations that require your advocacy. The better the relationship you have established, the better the cooperation you will (hopefully) find.

As one of the caregiver’s stated in my book:  “I found that my primary role, once my father was admitted to the nursing home, was to model the behavior my mother and I expected of the staff when we were not there.  By that I mean how we spoke with him, how we honored his requests and anticipated his needs, how we treated him with a great measure of kindness and love, respect and dignity. It didn’t take the staff long (all three shifts) to grow to love him and treat him as well as we did every time we were there.  It also helped that we recognized the hard work the nursing staff did every minute of their shifts by taking over for them with my father or by bringing them little treats from time to time. Always, every night before we left, we thanked them for their care of him.”

Barbara Matthews

Resentment: Recognize and Eradicate

When Your Parents Move In

Musings about Parenting Mom & DadAnn Marie

The Resentful Caregiver

May 12, 2014 · By AnnMarie

I wanted to be the kind of caregiver who never got frustrated, annoyed, angry or resentful. I aimed for perfection and heroism.

It wasn’t going so well.

First, I saw my mother-in-law go to her daughter’s after staying with us for 3 ½ years. As her dementia worsened, my frustration rose. I had my own parents to look after also, although not nearly the way I had to with my mother-in-law. In spite of my frustration, I wanted to be like the Old Testament Ruth who stayed by her mother-in-law’s side and cared for her in her old age as if caring for her own mother. I wanted to be like my friend Donna who welcomed her husband’s uncle into her home and kept him there until he passed away. Now, she is preparing to have her mother-in-law move in.

But I am not like Ruth or Donna. I am me: anxious, easily annoyed, angry that I’m the only daughter, angry that my brothers live so far away and have no idea what I go through. I like to throw pity parties for myself on a regular basis. I like to recount the day’s drama with my husband, daughters, or anyone who will listen.

I knew I needed to let go of these emotions—especially the resentment towards my brothers. It was eating at me, making me depressed, and affecting my relationships with those I loved. Intellectually, I knew it was wrong and unhealthy; emotionally, I wanted to keep throwing pity parties and be angry at everyone. I kept thinking back to a long-ago conversation I had with my priest on another topic, who helped me understand that life is not meant to be a continuous day at the beach (and I love the beach.) Sometimes you have to come home, and all you have to show for it is sand in your bathing suit. One of my favorite Scripture verses comes from 2 Corinthians 12:9:

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. (English Standard Version)

I love this verse because it’s a wonderful reminder that we are meant to make sacrifices throughout our lives, and in doing so, we become stronger in ways we never imagined.

I needed to embrace this Scripture verse as my own. I read articles and books. I searched the internet for resources. I printed out articles and highlighted the parts that I thought held some promise for me. I prayed for God to get me through the day.

Then it happened–only by the grace of God–I was ready to begin to let go. Somehow the intellectual part of me convinced the emotional part that I needed to turn over a new leaf. I needed to stop being a whiner, a baby, a five-letter word that starts with a ‘B’.

By the grace of God, I am beginning to be okay with the fact that one brother has gotten out of helping me by leaving this world, and the other two live 1,000 miles away. I have started reminding myself that “it’s only for a season”, as our lawn maintenance man (of all people) told me one day. I also realized that other living/caregiving arrangements wouldn’t necessarily be any easier. I can’t expect a hired hand to be responsible for my father’s medical decisions and follow-through. I would definitely get tired of driving somewhere to visit or assist my parents if they didn’t live with me. I am beginning to process this new outlook, and I’m trying to step cautiously: I know there will be ups and downs, good days and bad.

Letting go of anger, frustration and resentment, however, has lifted a heavy stone from my chest. It has lightened me, and reminded me how good peace feels when it fills your heart. I know, however, that the devil will try to tempt me down the road, especially when I’m least expecting it. I will have to put up a good fight. But by the grace of God, I am finally ready to try.

Categories: Caring for your parents, elderly, multi-generation home, resentment ·

Comments

bgmatthewsusername says:

August 24, 2014 at 12:36 pm

Ahhh….RESENTMENT. Here are some comments made in my book, “What to Do about Mama?”

In addition, I was faced with perhaps an even more distressing aspect of caretaking—one with which no doubt many of you are familiar, whether you’re caring for a loved one short or long distance—and that is resentment toward other family members for not shouldering more of the responsibility. Not that I necessarily expected a 50-50 split, but a more equitable one would have eased my burdens considerably. (WTDAM p. 42 )

These “non-child” relationships can bring a whole new set of emotional conflicts, such as difficulty getting along in unfamiliar roles or resentment for making sacrifices that the “children” are not willing to make. (WTDAM p. 49)

Then there’s the issue of the “others,” the ones who are not taking on the responsibility of front-line caregiving. Too often, they are the ones who second-guess or criticize you. If you haven’t felt resentment before, you will now, and that emotion can really destroy relationships. Are you prepared to cope with this ongoing stress? (WTDAM p. 73 )

There’s a resentment of my siblings happily living their lives without the worry of what’s actually going on not only in my life but also my dad’s. (WTDAM p. 79 )

Don’t set your bar too high in comparison to the standards of other involved parties. Set boundary lines and stick to them. Taking on too much commitment and making too much sacrifice breeds resentment. (WTDAM p. 192 )

Now that our caregiving has ended, the relief is so palatable that I have no more anger, resentment or bitterness left. I do not hold grudges, but I am a little wistful that the “closeness” of the past is probably in the past, and I am unsure of any potential for the future. (WTDAM p. 113)

I agree with you, AnnMarie, that it is important to let go of negative emotions, which is, indeed, not an easy task. It can help to take some concrete steps: 1) establish realistic expectations; 2) set boundary lines, and 3) communicate with the “others” to formulate a joint “contract of commitment.”

Barbara Matthews

 

A Second Book Review

Review of What To Do About Mama?: A Guide To Caring for Aging Family Members By Fairy C. Hayes-Scott, Ph.D., MarketingNewAuthors.com

wtdam_fcThe authors, Barbara G. Matthews and Barbara Trainin Blank, have presented a comprehensive work that will benefit every person who is in the position of being a caregiver.

The authors provide key information for all caregivers in every situation that can occur. Their work discusses the caregivers’ various responsibilities, the care receivers’ different reactions to their care, the wide support that hospice gives beyond moribund preparation, and the challenges posed by family members not providing the care. There are caregivers’ different narratives that clearly illustrate the situations that any caregiver will face. These narratives provide solid advice in a personal style that will maintain the reader’s interest.

An especially effective method is the personal sharing by each author. They have very different experiences, one providing within her home and one providing care from a distance. Their narratives that are interspersed throughout the work add to the authenticity of the work. Although personal, both authors do their best to maintain objectivity; they do not present information in a cold manner or overly subjective manner. Their sharing of personal experiences is quite effective.

Since this reviewer has been a caregiver with three family members, I know these authors’ experiences and the sharing by different individuals are very real. And the information they give will benefit every person who is a caregiver or a care receiver.

The culmination of the book is the chapter that provides clear recommendations for every caregiver. This chapter alone is well worth the purchase of the work. And as one who has been a caregiver, What To Do About Mama I know that this book is a must-read for every individual who wants to be a prepared and effective caregiver and a cooperative and more understanding care receiver.

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Different Perspectives on Grief

raindropEveryone has different perspectives; they are formed by our own personal histories. When it came to the topic of “grief” my co-writer and I discovered we have very different perspectives. Writing about grief caused some stress in our book-writing endeavor. What follows describes my point of view.

My father was diagnosed with lymphoma in 1958, at the age of 44. As was common during those times, the doctors advised my mother not to tell him. But, after a crisis hospitalization, she did tell my brother (age 15) and me (age 11). This became a family “secret” that was never discussed. Four years later, Dad chose to go to the Mayo Clinic in Rochester Minnesota, because he did not believe (accurately) that his physicians were telling him the truth about his diagnosis. There he was told that he had lymphoma. He died within a few weeks, never having returned home.

When my mother passed away suddenly 35 years later, all that I could think was, “She’s finally with him again; she has waited so long.” My father’s early death did, of course, have a profound impact on me. When I grieve for my parents (which I seem to do more the older I become), it is always in the context of the times our family lost with him—things like his never knowing his grandchildren.

In my husband’s family, grieving was more intense when their mother was alive and rapidly disintegrating day by day. It is not uncommon for children to struggle with facing their parent’s or parents’ deterioration—whether it is cognitive or physical—and grieve for the loss of the person they once knew even while that person is still living.

My husband and his siblings seemed to have a value about death that is similar to mine: As sad as it is to lose a parent, if that loved one has lived a long and good life, as my mother-in-law did, we didn’t look at death as tragic—just the natural end to living.

In truth, whenever I know of someone of advanced age who is sick and suffering and heading toward life’s end, I always say this little prayer: “Lord, take this soul quickly and gently into the night to be with You in your heavenly kingdom and in Your perfect love.”

Caregiver 2.0

27607spt

It’s normal to feel loss when someone you care about has Alzheimer’s disease. It’s also normal to feel guilty, abandoned, and angry. It’s important to acknowledge these emotions and know that you may start to experience them as soon as you learn of the diagnosis.

Alzheimer’s gradually changes the way you relate to the person you know and love. As this happens, you’ll mourn him or her and may experience the stages of grieving: denial, anger, guilt, sadness, and acceptance. These stages of grief don’t happen neatly in order. You’ll move in and out of different stages as time goes on. Some common experiences in the grieving process include:

Denial

  • Hoping that the person is not ill
  • Expecting the person will get better
  • Convincing yourself that the person hasn’t changed
  • Attempting to normalize problematic behaviors

Anger

  • Frustration with the person
  • Resenting the demands of caregiving
  • Resenting family members who can’t…

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