Posted: August 31, 2014 | Author: Barbara G. Matthews | Filed under: Emotional and Physical Challenges | Tags: death and dying, end-of-life-planning, grief |
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:
- The fundamental moral belief about illness is that knowledge conveyed by a doctor belongs to the patient and to no one else.
- 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)
- 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
Posted: August 29, 2014 | Author: Barbara G. Matthews | Filed under: Miscellaneous | Tags: canes, freedom, independence, perceptions, safety, semantics, vanity, walkers, wheelchairs |
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 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.
Posted: August 28, 2014 | Author: Barbara G. Matthews | Filed under: Caregiving Roles and Responsibilities | Tags: advocate, caregiving-book, dignity, kindness, love, model-behavior, personal-profile, positive-relationship, respect, thank-you |
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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?
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.
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.”
Posted: August 24, 2014 | Author: Barbara G. Matthews | Filed under: Emotional and Physical Challenges | Tags: caregiving-book, contract-of-commitment, eldercare, front-line-caregiving, multi-generational-home, non-child-relationships, second-guess |
When Your Parents Move In
Musings about Parenting Mom & Dad
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 ·
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.”
Posted: August 22, 2014 | Author: Barbara G. Matthews | Filed under: Miscellaneous | Tags: book-review, caregiving-book |
Review of What To Do About Mama?: A Guide To Caring for Aging Family Members By Fairy C. Hayes-Scott, Ph.D., MarketingNewAuthors.com
The 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.
Posted: August 21, 2014 | Author: Barbara G. Matthews | Filed under: Miscellaneous | Tags: caregiving-book, TV |
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Posted: August 18, 2014 | Author: Barbara G. Matthews | Filed under: Emotional and Physical Challenges | Tags: caregiving-book; perspectives, emotions, grief |
Everyone 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.”
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:
- 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
- Frustration with the person
- Resenting the demands of caregiving
- Resenting family members who can’t…
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Posted: August 17, 2014 | Author: Barbara G. Matthews | Filed under: Assuming Caregiving Responsibilities, Caregiving Roles and Responsibilities, Emotional and Physical Challenges, Impact on Family Relationships | Tags: autonomy, caregiving-book, decisions, driving, eldercare, financial-management, independence, rebellious, role-reversal, safety, threat |
Click on the Patriot-News link below to see a Doonesbury cartoon about role reversals:
– The Patriot-News.
A response to an AgingCare.com article:
http://www.agingcare.com Home>>Caregiver Support>>Family & Relationships>>Articles>>Switching Roles: Coping with Your Rebellious Aging Parent.
When I was an Assessor for the Area Agency on Aging I often met with senior women and their daughters. When I directed a question to the senior, it was not uncommon to hear the response, “Ask my mother here,” while indicating her daughter. Clearly they were referring to the issue of “role reversal,” which can be petty doggone tricky to navigate.
In the AgingCare.com article, Switching Roles: Coping with Your Rebellious Aging Parent,
Now who’s rebellious?
Carolyn Rosenblatt states: “You can’t just let a parent with signs of dementia or other significant memory problems go on as if nothing were wrong, even if she gets upset with you. At some point, the adult child who loves a parent must step in. You may end up setting limits, making new rules, or taking over certain decisions. This is not easy for most people. We are so accustomed to our parent making her own decisions, that to dare to tell her what to do is very uncomfortable.”
Carolyn is correct that reversing roles with parents is very difficult. But it is not always clear cut as to when to do so. When it is determined that you must step in, and the parent-child line becomes fuzzy, it is always important demonstrate respect for everyone’s roles.
An initial question to consider is: What takes precedence? Autonomy or safety? If the senior’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. After all, who doesn’t want to remain in the driver’s seat of life?
It is imperative to respect your loved one’s dignity—it is, after all, empowering to retain the ability to make choices and decisions. Show respect for your care receivers’ autonomy by seeking opinions and preferences throughout the care-planning process. Promoting as much independence as possible is key. Furthermore, caregiving responsibilities generally escalate as needs multiply over time. The less able our loved ones become, the greater their sense of independence lost. And as needs escalate, so does conflict.
Two huge problem areas that Carolyn Rosenblatt mentions are driving and financial management. These are both referred to in “What to Do about Mama?” For example:
- When our parents lose their ability to drive they require assistance with transportation, shopping, and running errands. And of course, since driving is synonymous with independence for most seniors, this issue may cause particularly intense conflict. As one son recalled: “When my father insisted that my grandfather stop driving, Grandpa, a generally sweet and mild-mannered gentleman, began to call Dad on the phone to curse him out soundly. I was glad that I never had to confront this issue with my own father!”
- “As my dad began having problems managing the finances, it was difficult to ease him away from the task so I could handle the accounts. Eventually, we worked it out so he would ‘check’ everything I did, which kept him in the loop, but gave me full responsibility for handling bills.”
In my own personal caregiving situation, my husband and I felt that living in the safety of our home would allow his mother to be more independent and active for a longer period of time. We felt that although the first two years of our caregiving arrangement were really quite good, there was always an undercurrent that somehow my mother-in-law perceived me (her primary caregiver) as a threat to her autonomy.
I tried very hard to respect her independence. I tried to empower her by presenting options and respecting her choices. But if she perceived me “directing” in any way she felt her independence was threatened and I sensed her resentment. Ultimately, I felt that most of the escalating friction could be attributed to my role as an in-law caregiver. Switching roles, or even the perception of switching roles, is indeed difficult.
Posted: August 8, 2014 | Author: Barbara G. Matthews | Filed under: Assuming Caregiving Responsibilities | Tags: baby-boomers, burden, caregiving, caregiving-book, children, commitment, eldercare, grandchildren, responsibility, role-model, support |
I often hear caregivers express different perspectives about their own children’s involvement in the caregiving situation. If we are embroiled in a difficult experience, of course we don’t want a like-burden for our kids. But is it really a good idea to shelter them from all responsibility?
As I said in What to Do about Mama? “Baby boomers are on the precipice—getting ready to fall off and land firmly on the backs of our children’s generation. And they are so young! They are, after all, our children!” (WTDAM p.1)
I think I can safely say that none of us wants to be our children’s
ball and chain.
Some folks see caring for parents as a given:
- “I’m not really sure what I thought about caregiving in the beginning other than it was what needed to be done, and as their children, this is what we do for our parents.” (WTDAM p.86)
But, in spite of any stated “willingness” to assume caregiving responsibilities, we are resolute in our desire to not saddle our own children with like-obligation.
- “I know I don’t want the roles to be reversed and hope I never to get to that point.” (WTDAM p. 115)
- “Given my experiences, I just hope I will have saved enough money so I can hire help, too, should the need arise. I certainly don’t want my kids to end up with this much responsibility for my later care.” (WTDAM p.120)
- “We want to minimize the impact on our daughter, who is five hours away with a very busy young family.” (WTDAM p.187)
Yet others point out their perception that caregiving was a positive example for their children, expressing the hope that the experience would contribute to their children’s personal growth.
- “I feel it taught my children many valuable lessons as well.” (WTDAM p.57)
- “I think it was wonderful for my two children to witness how we cared for their grandmother. We always gave her respect and showed gratitude for all that she had done for us. She needed us, and we were there for her. Although my children (young adults) were involved in the process, I probably would have involved them even more.” (WTDAM p.196)
Some were pleased with the contributions their children made.
- “Each of our adult children had an area in which they were able to offer help and advice; each offered to do what he or she could do from a distance. Our family has drawn together as we helped each other through this.” (WTDAM p.146)
Others were not.
- “I was disappointed that my children did not develop a more loving relationship with their grandmother.” (WTDAM p.171)
- “My family had difficulty coping with the time I spent on my mother’s demands. They felt resentful at times. My children have their own lives now; they support me, but not my mom; they visit only at my request.” (WTDAM p. 219)
Some children expressed gratefulness to their parents for taking care of their grandparents.
- “I know from a personal perspective (and one of NOT being a full-time caregiver) that I enjoyed having my grandparents living with my mom. I didn’t worry about them being alone or having to care for themselves as they got older. Plus, it was enjoyable for me having the whole family together under one roof when I visited. As far as my grandparents were concerned, it was a very pleasant experience for me.” (WTDAM p. 139)
- “My daughter said, ‘Thank you, Mom, for taking care of my Grandma and being such a good example for me.’” (WTDAM p. 28)
In my own caregiving experience the greatest amount of support that we received for immediate and unplanned caregiving needs was from our son and two daughters. They involved their grandmother in all their family functions, brought their children frequently for visits, picked her up from the senior center when needed so that I could attend support group, and sometimes either visited or took her to their homes when we had no other coverage. The girls sometimes shopped for her when she needed clothing items or OTC medication, and returned and exchanged the items if they weren’t “exactly” right. Their support for their grandmother went well beyond what we had expected.
It fulfills me to know that my husband and I were good role models for our grown children. Keeping their interest in mind, I saw caregiving as an opportunity for a “teaching moment,” (well, actually more than a moment), where they would learn and internalize the real meaning of family commitment (and never did our children disappoint).”
We are glad that our grandchildren were able to know and love their great grandma, and that we gave my husband’s mother the gift of our children and grandchildren. We are proud of the love, support, and appreciation they showed her.
- “Most importantly, at least from my perspective, was that she was central to the active life we were blessed to have with our family—three of her grandchildren and eight of her great grandchildren. She was always concerned about whether the little ones would remember her after she died. A short while ago the oldest said to me proudly, ‘I was the last great grandchild to talk to Great Grandma.’ She would be pleased.” p. 206
So, no matter the perspective, ultimately our children will experience pain related to our decline and our passing. They will discover that they cannot control the process of dying. And although we cannot, nor should we, protect them from the responsibility that lies before them, maybe we can at least prepare well enough that their road will be a little smoother to travel than ours has been.
Posted: August 4, 2014 | Author: Barbara G. Matthews | Filed under: Emotional and Physical Challenges | Tags: burden, caregiver-decline, caregiving, change, CHF, decline, inevitable, priorities, rationalization, slippery-slope |
I couldn’t help but notice the name of the poem by dementedgirl was the same as a heading in my book, What to Do about Mama? Obviously the concept is the same: the accelerated decline or our care receivers–despite our best efforts to maintain control and thwart the inevitable.
The Politically Incorrect Alzheimers Poetry Blog
It’s a slippery slope that we live on these days,
Mum-in-law’s changing in various ways,
After three years of “relative” stability,
She’s suddenly losing all of her abilities…
The days of the week to her are no longer clear,
Gaps in her functioning starting to appear,
A fridge full of food that is covered in mould,
Aggression and paranoia starting to take hold…
Increasing confusion, she’s slipping away,
It’s growing more obvious now by the day,
Hostile to the carers, rude to husband and me,
I shudder to think as to what might still yet be…
It’s all expected – doesn’t come as a surprise,
Reading stories of others has opened my eyes,
If I knew in advance, I could start to prepare,
But still somehow I am always caught unawares…
It is all so sad, but somehow all inevitable,
Still, that doesn’t make all this any less terrible,
It’s a slippery slope that we live on these days,
Dealing with this new and worse Alzheimer’s phase…
Thoughts on “Slippery Slope”
August 4, 2014 at 8:57 pm
SLIDING DOWN THE SLIPPERY SLOPE
Mom began to have more episodes of bladder or bowel incontinence and falls, sometimes one in conjunction with the other. She once fell in the bathroom at 3 a.m. because she was trying to clean herself up without waking us. Falls resulted in terrible skin tears because her skin was so fragile. Wound care was becoming one of the most difficult aspects of caregiving.
Another time, I had just gotten my mother-in-law cleaned up in the shower after an “accident” and was in a hurry because I had a doctor’s appointment myself. The appointment was important because I was experiencing shooting pains up the left side of my head. My mother-in-law had to sit down on the commode again, so I had to leave her sitting there waiting for my daughter to arrive to help her grandmother get dressed and have lunch. At the appointment I was diagnosed with shingles, an ailment common to caregivers.
After the next incident of incontinence a relatively short time later, my mother-in-law said, “I appreciate all the things you do for me. I appreciate your patience.” That was the first (and last) time she ever expressed her appreciation to me; it was good to hear.
My mother-in-law’s decline was especially difficult for my brother-in-law; his wife made a point to express this to me very specifically. He had no confidence in his ability to be alone with her. With tears in his eyes, he told me that he saw himself as the “last bastion of propriety” in his relationship with his mother. I did understand how difficult it is to watch a loved one’s decline; his brother, after all, faced it every day. I felt, however, that was not an acceptable excuse for not assuming responsibility. During that same conversation, his wife also made this comment: “My priority is my children. I am only a daughter-in-law.” I was amazed.
After Mom returned from the graduation trip the previous May, I had a discussion with her regarding my role as caregiver. I told her that I realized that she did not like me to speak up at the doctor’s office or for me to make comments about her nutritional needs. I told her that I would take a less aggressive approach with her healthcare, but that I would expect her to vocalize her wishes to me so I could proceed according to those wishes. Over the next several months I noted a gradual increase of edema in Mom’s legs; she was gaining weight, approximately two pounds per month. She was going to the doctor regularly; her weight was always documented; the doctor frequently looked at her legs. Mom never specifically brought up concerns about the edema with the doctor during that time—and neither did I.
Sometimes, no matter how hard you try, you just cannot stop nature from taking its course. One year after her initial pneumonia Mom became sick again, but this time it was worse. She was hospitalized with pneumonia and congestive heart failure (CHF), and the doctor made a referral for a pulmonary specialist to review her case. Her diagnosis was bullous emphysema; the small bubbles in her lungs had become large, limiting oxygen absorption. The doctor described her condition as “very bad.”
Two days later, David and I met with her doctor. Her oxygen needs had increased to 8-12 liters and were too great for her to be admitted to a nursing home. A hospice referral was recommended to facilitate our ability to take her home. David talked to his mother privately about the situation. When I entered the room, she had a forlorn look on her face. Later that afternoon David called me. Hospital personnel discovered that Mom’s hospital equipment was not functioning properly and that her oxygen needs were actually 2-3 liters. Hospital staff proceeded with getting Mom accepted into a nursing home for rehabilitation once again.
Mom was in the nursing home from mid-December until the beginning of February 2010, despite the fact that she had fallen in the facility a week before her discharge. I did not feel she was strong enough to be discharged, and indeed, she had two falls the first weekend home. Once again, we began in-home services: physical therapist, occupational therapist, and RN. I made sure to give the RN a heads-up before she came; Mom looked like she’d been beaten up due to multiple skin tears from her falls. On February 8 my knee locked up while squatting to dress Mom’s six wounds. The knee became difficult to unlock, and during subsequent episodes, remained locked for up to 12 hours at a time causing me to limp and walk on tiptoe. Two times Mom and I almost went to the ground together!