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.
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,
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.
An AgingCare.com question was recently asked that highlights the conflict between safety and autonomy for seniors. http://www.agingcare.com/
My grandparents will not accept help and there are too many cooks in the kitchen. Should everyone back off?
I agree that everyone should back off. People like your grandparents often feel bullied by all of this pushing. They may eventually agree to some help if they are given what you mentioned – loving attention and distraction. If they feel free to make their own decisions they may become more reasonable.
I also agree that if they aren’t too resistant to wearing personal alarms to call for help that would be a step forward. Because of all the pushing in the past, they may even refuse this for awhile, but in the future you could gently mention that this form of help is non-intrusive and possible so that you’ll set it up if they decide they want it. To me the magic words are “they decide.”
I know it’s hard to watch this and not try to fix it, but human dignity and the ability to decide for oneself is important. Good luck to you all,
“A productive family meeting can build a strong foundation for family caregiving. Do you share common values? Talk about what is most important to all of you—autonomy or safety. Establish common goals. Divide responsibility based on the strengths and abilities you bring to the family. It is important to be specific. Develop a contract that delineates the commitments family members have made, and solidify those commitments with signatures that verify that everyone understands and agrees to the plan. Be sure to date the contract in case changes are needed later on.”
In your situation you have an extensive family, so finding consensus will be a challenge. I agree with all responders that the family needs to back off for now (this would be part of your family plan) and allow your grandparents to regain their sense of autonomy. Once they feel a greater sense of control, they MIGHT be ready acknowledge their need for more help and make the choice to accept it (offered up in small steps). If they don’t, then they will suffer the consequences, and none of you should feel guilty, say “I told you so,” or allow those consequences to become YOUR consequences.
If you feel the situation is very dangerous, you can always call your local Area Agency on Aging with a report of need. The report can be made anonymously.
Definitely back off, no one likes to lose their independence and it’s difficult for some when they begin to lose skills such as their ambulation skills. It’s good they can use a walker but it sounds like they could use some physical therapy to strengthen their ambulation skills. Many don’t like strangers coming into the home, and it may be that your grandparents are afraid that if someone comes in they will be ‘made’ to go into a nursing home. Assure your grandparents that is not the case, there are many programs out there to keep people in their homes such as a waiver or senior care program. Call your local Area Agency on Aging to see what’s available in your area or to speak to someone for caregiver support. You can arrange someone to come out to visit your grandparents to explain about home and community based programs that are designed to keep people at home and they can reassure your grandparents that no one wants to see them in a nursing home. They have a right to make choices, but the choices need to there so they can choose. I’m a caregiver, I’m over 50 and I have medical issues that have brought on a decline in my functioning so I know how difficult it can be to accept assistance. You grandparents have always ‘done’ for themselves and now that they can’t it’s difficult for them to admit that and accept help. Continue to reassure them that you want them to stay in their home and there is help available to those who need it to keep them in their home. Most important of all is to let them know you love them and want them to be around for a long time.
The same type of issues were coming up with my dad. We knew he could not live alone, the doctor even said that he should not live alone, but he wanted to stay in his home, and the family was getting so stressed out and worn down, making sure he had meals, personal hygiene, outings or some social life and keeping his home clean, getting him to doctors’ appointments, etc. it took all four of us full time just to get it all done. After years, he could still not see all of the work it took, so the 4 of us decided to back off. We made sure that he had food, made the house as safe as possible, life alert, cell phone, he could not drive a car, so we sold the car, we did not want him getting behind the wheel, but wanted him to keep his social contact, like meeting the guys at McDonald’s for coffee, so we got him a electric scooter, and worried in silence that he did not get hurt. We visited him every day, but did not push him. Then something happened! He said that he wanted to see us all; he told us that he could not do it by himself. He told us he was willing to visit an Assisted Living Facility; he decided which facility he preferred. Your grandparents will never see how much is being done for them, unless they experience it for themselves. They still see that they are able of doing it on their own. They have to see for themselves that they cannot do it on their own. If they have a fall, or they miss a meal, be there to support them; when they are ready, they will be ready on their terms. Your biggest problem is your family. Unless, the whole family can agree to step back, the grandparents cannot ever figure it out. Why should they, as long as they are the center of attention, and being waited on for every need, I wouldn’t be in a hurry to change either.
WTDAM (me again) comment:
Great example, “lostfamily” of using the approach I outlined above. And as I said on p. 50 of “What to Do about Mama?”: Of primary importance is the individual who needs the assistance and care. If that person’s values and wishes are not respected and taken into consideration, you are bound to run into resistance and conflict. Who doesn’t want to remain in the driver’s seat of life? It is imperative to respect your loved one’s independence and dignity—it is, after all, that person’s right to make choices and decisions.
In “Me and These Men” May 5, 2014, MKC posts:
There are PLENTY of ways to lose your mind once your parent has moved in—but prior planning certainly does help. I address this same topic in my book, “What to Do about Mama?” on pages 72-73 and 77-78.
Providing Care in Your Own Home
As much as you think you can look dispassionately at the situation and develop realistic expectations, frankly, no one can imagine the scope of what he or she is getting into. How can you know the unknown?
But certainly, if this is the choice you make, be sure that you and your spouse or partner are as prepared as possible. Your home needs to be made safe and handicap accessible, with equipment such as grab bars and shower chairs. Throw rugs should be removed from walkways. It is best if you can provide one-floor living capability, which can be an extra challenge if there is no bathroom facility on that level.
Discuss how responsibilities will be divided among those living in the home, as well as those providing outside support. Don’t forget to talk about finances. Bringing your loved one into your home will put extra demands on your budget. Make sure you will have opportunities for respite and time for yourself; don’t “lose” yourself in the process of caregiving.
Most importantly, consider whether your relationship is strong enough to handle the demands of living together. If you have problems historically, they will continue or even get worse. Even if you believe you have gotten along well, be prepared; there may be some surprises you just didn’t foresee. Keep all the household members in mind—are there personality clashes? 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?
If you opt to bring your loved one into your home, establish an open line of communication. Talk about and listen to expectations on both sides. It is so difficult to respect everyone’s roles when the parent-child lines become fuzzy. To encourage a positive and cooperative atmosphere in your home:
Designate a personal space for your loved one that is not too isolated from the rest of the household. Fill it with his or her belongings, collectibles, and mementos.
- Talk about individual routines, and try to accommodate everyone’s needs as closely as possible without compromising your household and family values. Will you have enough time for other family members? If your spouse or children are required to sacrifice what they hold dear, the household climate will become a breeding ground for resentment and conflict. Remember that family support is vital if the living arrangement is to be successful.
Emphasize household customs, and solicit support for avoiding unneeded disruptions. Will you be able to maintain important lifestyle concerns such as employment, social life, and vacation plans? Are you prepared to make adjustments?
As a family, discuss what you each value and what causes you stress.
Set boundaries in the relationship, but make sure to schedule time together.
Help the care receiver develop new activities and friendships.
Encourage mutual respect based on communicating wants and needs, not giving orders. Stress the importance of being open and honest with each other. This is particularly difficult when your care receiver goes around you to complain to the “others,” which also sets the “others” up to second guess your actions. Direct communication is the key to avoiding misunderstandings.
As Laura said in her blog, “The Selfish Caregiver:”
“I’ve often pondered if I regret not telling her to shove it and just moving back and forcing her to deal with it. But as much as I believe in caring for your loved ones when they need you, I also believe that a person doesn’t give up their autonomy just because they get sick. And I’m pretty sure that me, moving back into her house and giving up the stuff she knew I loved, wouldn’t have been selfless–it would have been me, assuaging my own guilt and pissing her off by treating this incredibly stubborn, independent woman like a child. So I respected her wishes, even though it killed me.”
Autonomy is a really important value to consider in making caregiving decisions. It was a big factor in my own caregiving experience—one that I revisit several times in “What to Do about Mama?”
• Talk about what is most important to all of you—autonomy or safety. (WTDAM p.54)
• We would like to emphasize again, however, how important it is to respect care receivers’ autonomy by seeking their opinions and preferences throughout the care-planning process. Promoting the independence of care receivers is key to helping them maintain their dignity. (WTDAM p.189)
• Still, we did a lot of things wrong: We did not include Mom in our initial discussions. Ultimately the decision was hers, but she was strongly pressured. We did not discuss our values or explore other options to moving north. What took precedence? Autonomy or safety? (WTDAM p.32)
• I had the expectation that when you moved here that our relationship, which I always considered to be good, would become even closer and warmer. I felt that living in the safety of our home would allow you to be more independent and active for a longer period of time. I think our first two years were really quite good, but there was always an undercurrent that somehow you perceived me as a threat to your autonomy. (WTDAM p.27)
• Caregiver Experience: Respect for care receiver autonomy. See Nathan’s Story (WTDAM p.190)
And by the way, I really enjoy Laura’s blog. She is a young woman wise beyond her years, having lived through the loss of both of her parents (as well as a good friend) in a short period of time. Also, she doesn’t mince words.
I think that young adults often feel that caregiving doesn’t apply to them. Two of my three children have reacted to my book noting that has a negative tone, but that it is probably helpful “those who need it.” My response? As I stated in my March 9th blog “Long-Distance Caregiving:”
“As much as I support being ‘positive,’ the truth is, who would ever choose to lose their health and abilities on the end-of-life path that we will all travel? And what caregiver would choose this debilitating journey for their loved one? It is never easy.”
Unfortunately, that lesson is now hitting home. My daughter-in-law’s mother had a recent and sudden diagnosis of stage four colon and liver cancer with a very poor prognosis. Caregiving has now become more relevant.