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Hi, I have been in situations where I've cared for someone who is too needy and have learned to set better boundaries with these types of people. But I am now having trouble knowing how to care for family members who are completely averse to accepting any kind of help or care. They are fiercely independent to their own detriment and hate the idea of becoming dependent. In some ways, I think they prefer death to losing independence or feeling like they are a burden on someone else. In fact they've told me they prefer suicide over being cared for even though they have lost many physical functions and mobility. Instead of asking for help, they just eat unhealthy frozen tv dinners and don't bathe very often because they've lost the ability to cook and chop food due to a wrist break and acute arthritis. They think they are keeping their dignity by doing everything on their own, but they're actually living in a more undignified way because they refuse to ask for/accept help. What are some ways that I might be able to get someone like this to accept care and not feel like they will be a burden?


Has anyone else had this kind of experience?

Sometimes elders who want to maintain their independence are more open to home updates and services allowing them to maintain more control than in "assistance" or "take over" measures. One example is bathing. Many suggest bathing assistance when we first notice our elder is not as clean as they used to be. If we believe physical limitations and general energy levels are the cause, do we first offer a bathroom "touch-up" to include grab bars and hand rails, ADA toilet, transfer bench or chair, hand held shower, light and heater upgrade, wall shelves for washcloths and towels at a easy reach height? Did we offer the touch-up before our elders actually needed it, but encroaching age meant problems were coming sooner or later?

There are healthy frozen dinners and side dishes, Meals on Wheels offers 5 good meals a week, many groceries offer deli options (including chopped vegetables), and grocery pickup orders are a wonderful option for someone without the energy or mobility to select complete grocery orders. The older couple down the street give me a call with their base grocery order (cereal, butter, canned rolls and biscuits, muffin mixes, sugar, coffee, canned goods, toilet paper, laundry soap, etc) and I create a grocery pickup order for them and schedule a mid morning pickup. They go to the store a few minutes before the pickup window and shop for produce and bakery items, then pickup the order and head home. They use a small wagon to get items needing quick put away into the house. The guy that delivers their Meals on Wheels carries the rest of their groceries into the house and places them on the kitchen table. They keep their basic housework up but have a cleaning lady in one day every 3 months to deep clean.

Maybe this senior couple would be better served in an IL/AL community but they want to remain in their home as long as they are both living. They plan for the survivor to move into an AL. Because I invited this couple to a holiday meal, they saw Mom's bath transfer chair and hand held shower and asked where they could find/buy them. They saw a story on the local TV station about grocery pickup and asked me how they could use the service.

With my own parents, I used a "on trial" method to get some upgrades into their home - like a ceiling fan for an anniversary present with a promise to take it back down if they didn't like it.

I have arthritis in my hands too so I have a lot of "opening" aids and some lighter cookware for daily use. I have adapted my chopping/dicing technique to placing the heel of my non-dominate hand on the end of the knife blade and applying a lot of the cutting pressure from there. When cutting potatoes for soup, I will often cooking them a bit in the microwave to soften them before dicing. So reading about OT techniques or having a few in home OT sessions focused on difficult tasks can help a lot.

People who are determined to maintain their independence and/or age in place are more likely to appreciate tools and methods to _help_ them take care of themselves than actual help from others. They may prefer a light vacuum broom to someone sweeping the floors. It may be a different kind of dignity than you would choose for them, but it's still their choice. Having a "if they were only not so stubborn and would do things my way" attitude limits your ability to explore around the edges of what they might actually accept. To paraphrase a bit, if only you are not so stubborn about there being one right dignified way then maybe you could find some other workable solutions. :-)
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jules78 Jan 9, 2020
Do you happen to have any links to resources for OT techniques that have been particularly helpful for you? I think this could be a great thing for us to research!

And you couldn't be more correct with your reply! They are much more likely to rely on helping tools, but still have trouble adjusting to tools made specifically for 'old people' - won't use a walker or a cane even though they have fallen and ended up in a nursing home for a recovery period. It's just like you say though - they are willing to depend on some tools for assistance, but would never dream of depending on a human being. You are very perceptive about saying I am imposing my views about dignity onto them, and I need to make sure to remember they are the authors of their own life, not me. But I still feel like their shame around feeling like a burden couldn't be more inaccurate. One of the greatest things about being in a relationship is being there with that person through the good and the bad and the suffering. To cut me out of their suffering isn't just isolating them - it's isolating for me as well, and I feel sad that I can't experience that part of our relationship. But I love all of the strategies that you've suggested and am very grateful for your reply.
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Change is hard for most people. For elders, it can be frightening and disorienting thing to find that they can no longer do what they've done for themselves all of their adult lives.

I remember one poster who has since left this site saying that she and her sisters told their mom, who was becoming frail and less able to care for herself, that one of ther sisters was having financial difficulties and would greatly benefit if mom moved in with her and paid rent. The mom, very independent, saw this as a way to "pay her own way" and help her daughter out.

The financial distress was fiction. But the sisters knew their mom well enough to craft a scenario that would preserve their mom's dignity and get her needs net.
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jules78 Jan 9, 2020
That is really a cool, creative idea! I never would have thought of something that! Yes it does seem like my folks are grieving their independence, and it's a process. I guess I could say they're in the "denial" phase now. I can imagine how hard it would be to lose faith in your body. Thanks for sharing this story.
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How loving of you to WANT to help. Maybe there are cleaning or maintenance chores you can do to take those things off your parent's list. You could also prepare healthier meals and freeze them in appropriate portions to offer healthier "quick and easy" meals. Maybe bring them some "bathing wipes" to use "between real baths" or "when it is too cold" to shower.
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anonymous590591 Jan 12, 2020
How kind and considerate of you to be respectful of the parents wishes. So much better to offer reasonable, practical solutions than to recommend jumping in and taking over their lives. I hope my children will be so thoughtful in the future.
Good advice!
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Sometimes, these family members who are so proud that they can do things for themselves don't consider how stressful they are making things on their loved ones. They don't seem to realize that their stubbornness is causing you grief. It makes me wonder if they are thinking clearly. There is a fine line. How far do you let people go with dangerous living situation or health risks, before you say enough is enough? The thing is, if they are competent, they have the right to live as their see fit. Their poor decisions are their poor decisions. But, if their competency is gone, then, others do have a say so in how they are living. At some point, I'd stop worrying about their pride or sensibilities and just look at the health and safety issues.

Do you have access to their doctor? Can you accompany them to the doctor and share your concerns? Are you the POA and HCPOA? I might consult with an Elder Law attorney to see what your options are. At least you can find out what your options are to get them help, if it reaches a crisis. I have noticed that with some of the seniors who resist help despite needing it desperately, they end up in a nursing home with injuries or ailments that might have been avoided if they had accepted help earlier. That's one thing about seniors. It seems that many REFUSE any advice and refuse to use good judgment. It's sad and stressful.
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jules78 Jan 9, 2020
Exactly - I am trying to find that balance between preventing health risks, but also letting them live the life they want to live. It is extremely difficult to watch someone hurt themselves because they didn't use the cane or the handrail and fell. But on the other hand, my dad in particular has made it through vast amounts of pain in order to overcome his physical ailments, and that is an accomplishment that he is proud of, which makes up part of his complex identity. I wouldn't want to take that away from him. But yes I wish they could empathize with my position too sometimes. Honestly it's been difficult to even broach the subject of POA and they rarely visit the doctor - only if there's been a major fall. I mean these are people who have literally walked out of the ER even though their doctors were telling them they are not discharged, so I might be dealing with a pretty extreme case by some standards.
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Tizaboy you are so right ! I too , at 72 am taking care of my husband who is also “functioning moderately well “ I know my limitations now but did at first try to deny I needed help . When broached by my children we discussed how they can help me but thank goodness they did this with the respect, love and dignity that we elderly people still deserve . I am not a toddler and even tho may wish that things could stay the same they made it clear that we helped them throughout their lives in every way we could and they want to do the same for us . We are thinking and feeling human beings and the way things are presented to us can either get our backs up or make us reconsider what we initially refused. Whatever I can do on our own I do . Grocery delivery is a Godsend as is restaurant delivery . Prepared food that I always shunned has also become the norm . But a visit from
my children , an outing with them helping get my husband out , or just staying with him while I go to the Dr or Dentist for myself is never refused now . I think when the time comes for more help I may balk at first , which I think as human beings we all hate getting to that point , but will realize I make their lives tougher by being stubborn . Please everyone , you will be in our shoes faster than you know and will aggravate your younger loved ones too . Do not talk down to us . Reason with us rationally , give us time to digest your opinions on how to help us and we may surprise you .
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I think this is a fairly common problem, it goes hand in hand with the people who delude themselves that they are independent when in fact their families are jumping through hoops in the background. And it's amazing how many people in their 80's and 90's think that they are too young to need assistance or to move into a more supportive environment!
If family doesn't have the will or the means to force change then the trickery Barb mentions may be helpful - people have told a loved one that medicare requires an annual check up in order to get them to the doctor, or that banks are insisting that everyone over 80 appoint a POA, or that in home services are covered under insurance... whatever works to address the need at hand.
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jules78 Jan 9, 2020
I am imagining getting my father to visit the hospital using this method! (He won't go in for checkups - EVER! Says he'd rather not know what's wrong with him)
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One strategy I used with some success with my fiercely independent mother was to flip the script. When she refused to accept help from me, I would explain that that hurt my feelings, that I felt rejected or like I had nothing to offer, that no one wants to feel that they are the only person in a relationship who always receives and never gives, that I wanted to feel like I could also make a contribution that mattered. All of that was actually true, and though it may sound manipulative and dramatic, it was frequently effective, I suspect because she recognized the very feelings I was describing. Those were her greatest fears.
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Somethingelsa Jan 11, 2020
I don’t think you’re being manipulative at all . I think you are actually speaking the truth and being very wise . As a daughter who helped care for her mother and a mother who now needs a bit of help from her daughters I applaud you .
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Search for adaptive devices through physical therapy and occupational therapy. Show pictures of the devices or see if you can arrange for your person to demo the device. Explain that you noticed that "x,y,z" task has become more difficult and wondered if "this" might be helpful.
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One tactic that has been used successfully is to say, "But this is what family members do - they help one another!" Tell them that providing at least some assistance is not a "burden," but part of being a responsible family member.

I have often used the analogy of a toddler to make elders understand. A toddler wants very much to be totally independent, but their bodies and minds are not capable of this. So, family members assist them, but allow them to do as much as safely possible on their own. It's exactly the same situation at the other end of life.
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Tizaboy Jan 11, 2020
I am 77 and caring for my husband who has Alzheimer's, fortunately functioning moderately well. Due to physical limitations I found we need help and fortunately can afford it to a degree. I would be horribly insulted and would feel patronized if someone likened us to toddlers. Rethink that analogy please.
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Hi Jules78
My mom lived in a different state from me and when I visited her, she did not want me to do anything for her and she believed she was able to take care of herself. A cousin of mine who had difficulties with her mom told me my mom would eventually crash. My cousin was right, my mom reached a stage where she crashed where she could no longer handle her basic needs and at that point I was able to move her to into my home. This may not be an option for you. Since your family members have lost a lot of their physical mobility and are no longer focusing on their hygiene this sounds like a point where you should be able to step in to make the best decisions for them. Remember to monitor your stress and you can only do the best you can do.
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