A Guide to Caring for Aging Family Members

Posts tagged ‘family’

Aside

Too Many Cooks in the Kitchen

An AgingCare.com question was recently asked that highlights the conflict between safety and autonomy for seniors.  http://www.agingcare.com/

A Question was asked by KAT2014:   Cooks

My grandparents will not accept help and there are too many cooks in the kitchen. Should everyone back off?

My grandparents can barely walk with walkers, they’re in constant pain, they have a ton of family members breathing down their necks telling them what they should do but at least we got my grandmother on anti anxiety meds (that only helps so much). Everyone is wearing themselves out helping my grandparents but it just angers them. We can’t even convince them to let someone meet with them for an hour just to discuss the idea of getting some profession in home care. Before I was supportive of everyone helping but I’ve changed my attitude. Now I feel my grandparents (and everyone for that matter) are so stressed and upset that everyone needs to just back off. Will one of them end up in the ER or worse–yes. Will their lives be easier if they had prof. help–yes. Will they accept help–NO a hundred times over. I feel they need love in the form of good conversation and distraction from the topics of health and death. What is the right thing to do? Force them to get help when they’re already furious or back off? The entire, huge extended family is miserable at this point. How can we help my grandparents move on gracefully? (they don’t qualify for hospice just yet but they did come by one day)

 

Expert Carol Bradley Bursack replies:

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,

Carol

WTDAM (that’s me!) comment:  On p. 54 of my book, “What to Do about Mama?” I state:

“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.

Terryjack1’s comment:

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.

Lostfamily’s comment:

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.

Barbara Matthews

 

Empowerment

Susan Diamond’s blog entry “When Aging Parents Can No Longer ‘Do.’ Ways To Empower So They Can Continue to ‘Do.'” is about empowering aging parents:  http://helpparentsagewell.com

I’d like to share a few more examples of empowering aging parents.  When my MIL moved from Florida to our hometown, she bought a pontoon boat.  This was something she always wanted.  My husband was the captain and we took her boating frequently with family and friends.  She’d strut out of her retirement community building with her jaunty pink cap to go boating—and I knew she was “showing off” a bit for the other residents.  Unfortunately, she fell in the bathroom after a day on the boat and broke her tailbone and pelvis.  That was the end of the boating, and the beginning of the vicious cycle of falls, hospitalization, and nursing home rehabilitations.

My MIL then moved in with us and I was her primary caregiver.  We had two good years before the next decline.  I took her to the senior center twice a week to play bridge.  Sometimes we would have lunch and bridge parties at our home.  Best of all, she was able to participate in all our family celebrations.  When the grandchildren were around (and running amok), she liked to say, “I started all this.”

Pneumonia and congestive heart failure began to ravage her body and she started receiving hospice services.  Even then, we put a lot of emphasis on maintaining social relationships and activities.  Hospice loves to come in and help people enjoy everything they can do in life. Her hospice group supplied MIL with a transport chair so I could get her out of the house to go to the senior center, and with travel oxygen so she could go to the beach with her daughter.

Even if the last two years in our home became extremely difficult, I feel good that we did the best we could to empower my husband’s mother.

Barbara Matthews

The Family Meeting

Debbie Williams-Maclean’s discussion of the family meeting is right on. As I’ve stated in “What to Do about Mama?” (p. 54):

“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.”

Although we initially had a family meeting in our own caregiving situation, we were not specific enough about expectations, responsibilities, and commitments. After my mother-in-law had been living with us for two years, I started to attend a support group, which led to a second family meeting. This excerpt from “What to Do about Mama?” (pp. 12-13) describes that experience.

“The group leader suggested that we try to schedule a family meeting. I spoke to Shelley about the idea, which led her to call her other siblings and schedule one. Shelley also suggested we make a list identifying “What is Working and What is Not Working” (Shelley is a social worker), to distribute to the family beforehand.

David and I worked very hard on our “assignment.” We wrote openly and honestly about objectives, environment, health, communication, socialization, and family support—enumerating the positives and negatives in each category. What was “heard,” however, were only the “criticisms” regarding the unwillingness to take risks and make sacrifices, requirements to schedule respite visits a year in advance, “can’t do” attitudes, elevating other priorities over and above Mom, and the second-guessing of our decisions. At the meeting, David’s siblings reacted defensively and angrily. I assume much of that stemmed from guilty feelings. They made comments such as, “You don’t understand the pressures of our jobs.” The meeting was stressful and emotionally exhausting. I had to leave early to babysit grandchildren, and the meeting continued with David, his siblings, and now their mother, too.

After I left I felt anxious and sick to my stomach. I was worried that the meeting set us all back more than it had moved us forward. But later, when David joined me for our overnight babysitting stint, he expressed that he was satisfied with what had occurred. He said that the process was cathartic for him; that at least we got a response out of his siblings. Scott had apologized for the remarks he had made to me, and everyone agreed that ineffective communication was the main problem.”

As Debbie also says in her entry Person-Place-orThing, “In my everyday quest to devour as much information on the subject of Caregiving, I run across all sorts of articles. Debbie is certainly right on again. And I will add that it a really good to look at and consider a variety of perspectives and ideas. That’s what’s great about support groups…but that’s an entry for another day.

Barbara Matthews

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