Five Ways to Help a Parent with Dementia who Refuses Care
1. Try to understand how they feel. Put yourself in your parent’s shoes. It is very difficult to accept aging in general, but especially the fact that mental capacities are diminishing.
This loss of independence is a very frightening prospect and one that most people will fight. If you understand how your parent feels at this time in life, it will give you increased understanding about how to approach the conversation about the care that they will need. Approach discussions of in-home assistance or moving to a care community with compassion and facts. If you can show your parent what the caregiver looks like, or what their new home will be like, it may help to ease the transition. These two examples illustrate ways to better understand your parent’s point of view:
“What makes me want to freak out is when mom has a major mood swing, which happens almost every day. She was diagnosed with early-onset dementia when she was just 56. On some days, you’d meet her and think she was a normal lady in her late 50s. But something as simple as suggesting she take a shower sets her off. Then, five minutes later, she seems fine and asks me what’s wrong. Thisrollercoaster ride made me increasingly on edge until my girlfriend said, ‘that’s a bummer but how do you think she feels?‘ So I made myself a little card that I keep handy and it has a single word printed on it: Empathy. I think what it would be like if it were me, and it helps me cope.” – Son caring for his mother with early-onset dementia
“My older brother is a stubborn old goat. Sorry, it’s true. He is still in the early stages of dementia, still living on his own and can mostly take of himself, but my wife and I speak with him by phone or go see him every day of the week. He’s always glad to see us until we bring up ‘the subject.’ He kept saying ‘I’m 67 years old, so I forget where I put my keys once in a while? I’d say that’s pretty normal.’ But he fails to remember that he lost his keys for two days last month, and just last week he locked himself out of his house and sat in the backyard for six hours. He’d probably still be there if we hadn’t become concerned and dropped by. Anyway, this is so upsetting to me and I let him know I was a little angry and scared. Then my wife AKA genius said, ‘I’m scared and angry, too, honey. But can I ask you something? What if it was you? What would you want your brother to say or do to help?’ I thought about it for a moment and then I said, ‘yeah, ok, well, I guess I’d want him to take a second and try to think about what I’m going through and to try to understand me — and to tell me so.’ My wife’s knowing smile told me keeping this in mind will help us all get through this.” – Brother caring for his sibling with early-stage dementia
2. Ask questions. You may be trying to provide help for your loved one with dementia directly or provide extra support to ease the burden on the spouse who is caring for him or her.
In either case, ask non-threatening, open-ended questions about the type of help that is needed. For example, you might ask, “Mom, wouldn’t it be nice if you didn’t have to do the laundry anymore?” Or you can ask the spouse, “Dad, don’t you miss being able to go to lunch with your friends?” The answers will give you information and an opening in which to discuss how caregiving can make life easier. These two children of parents with dementia learned to use questions as a way to improve their communication:
“A friend of mine who works with dementia patients told me that even though my dad has trouble expressing himself, that his need for communication is as strong as ever. She suggested that I ask questions designed to give dad a little control over his day. I followed her advice. At first, I got really frustrated with him. Then it hit me: ‘What if I just slow things down a bit and work at dad’s pace?’ My father can’t express it, but I know he feels things — including my anger. For me, that was a game changer. After all, what’s the rush?” – Daughter caring for her father with dementia
“I finally wised up and started asking questions that open themselves up to more than a yes or no response. You know, open-ended questions. ‘Mom, where do you see yourself living as you grow older?’ ‘What if you hired a housekeeper or driver so you could keep living at home?’ I also try to dig deeper to try to figure out the real reasons she refuses help: ‘Mom, do you not want someone here because you are afraid they will invade your privacy? Or because you’re afraid it will cost too much? Or that you’ll lose your independence?’ She can’t always give me a clear answer, but I just have a feeling she knows at some level that I am trying to help.” – Son caring for his mother with dementia
3. Be patient. If you are talking to a loved one in the early stages of dementia, he or she is not going to be able to focus on the conversation for a long period of time.
As attention wanders, be patient, listen attentively, talk about other things, then bring the conversation back to the topic at hand. Wondering how to actually put it into practice? Try one of these tested strategies if you get stuck:
“Every ounce of patience is required when I’m looking after my first cousin. I mean, he acts so weird at times. So I learned to use three steps: First, I try to stay calm, and also attempt to make the home environment as mellow as possible. Next, I’ve found that playing some of his favorite music helps create a positive vibe. I swear this works! Finally, whenever I can, I try to chunk down activities into small steps. It helps us stay focused — and helps me be more patient.” – Man caring for his cousin with dementia
“I tried every technique I could think of to keep my cool but I only got increasingly frustrated and feeling alone in the world and I admit it — I was starting to feel sorry for myself. But then I stumbled on a caregiver forum for families of people with dementia. It hit me that the one “technique’ I hadn’t tried was to ask for help. I can’t really afford a full-time caregiver and I don’t have family living close by. So I asked a friend I work out with if she’d come in once a week for an hour or two and give me a break. Turns out her great aunt had dementia when she was growing up and she said, “how about TWICE a week?” So my friend comes in on Wednesday evenings and Sunday afternoons and it’s made a huge difference. It gives me enough me-time that it helps me be more patient.” – Woman caring for a family member with dementia
4. Give choices. Giving your loved one options will help him or her to feel that they are part of the process and have some control over the decisions that are being made. You wouldn’t want someone to force you to accept strangers in your house and neither does your loved one.
Discuss whether or not mornings or afternoons are better for a caregiver to come. Give your loved one a chance to select which day of the week is better for them and what activities a new companion might be able to help with. Take a look at how these caregivers incorporated choices into their family members’ day:
“When making decisions, I didn’t give dad many options because I thought it’d only confuse him. But one day I thought, what the heck, could it hurt? So I said, “dad, if you and I decided to have a helper come in a couple of days each week, which days would you prefer? Tuesday and Thursday? Or how about on weekends, Saturday and Sunday?’ Now, sometimes this works and sometimes I get a non-response and other times he still gets irritable. I just have this feeling that I can’t quite put into words…sort of a feeling of more camaraderie between us.” – Daughter caring for her father with dementia
“Well, I did try giving my wife, Angela, some options but it never seemed to work like I hoped. Frankly, she didn’t like ANY of the choices! I don’t know how but for some reason it came to me that maybe it’s not the message…maybe it’s the messenger. As in, what if I tried having someone besides me give my wife some options? I had a professional caregiver come visit and we sat and had coffee and she was able to ask my wife questions about her care and…it worked! I have to bite my tongue a little bit when she sings the praises of ‘that smart, sweet caregiver,’ but it’s sure worth it!” – Husband caring for his wife with dementia
5. Take it slow. It is very important to retain your parent’s dignity throughout this process. Introduce the caregiver so they can have coffee together or take a walk. Ask the caregiver to accompany you and a parent to a doctor’s appointment. Have the caregiver take your parent grocery shopping so that you can remain at work.
Taking these small steps will let your parent become accustomed to assistance from someone other than you. Your parent will be able to see that it doesn’t feel like an imposition. It is also an opportunity to see if the caregiver is a good match with your parent. Learn from these daughters’ ‘aha’ moments:
“I am a straightforward, get things done kind of person by nature. So when I moved my mother in with us, I took the same disciplined approach I take with everything else. I figured that since her dementia was still pretty mild, that she’d be agreeable to my ideas. Partly because we always got along so well. Well, not so much. I hired the best caregiver I could find. Mom hated her. I finally figured out that I needed to work at my mom’s pace, not mine (duh). I mean, if it takes a few weeks for her to be comfortable with her caregiver, who cares? Sounds silly, but I mentally picture a jar of molasses in my mind. I even try slowing my breathing down to remind myself that my mother can’t help it and that she is coping the best she can. We met the new caregiver three times before I left them alone together. I introduced her as my new friend. Mom is still a wild tiger at times, but she has accepted the caregiver into her world.” – Daughter caring for her mother with dementia
“When we were kids, my older sister swam like a fish and I was scared of the pool. So one day she took pity on me and said, ‘just come sit down by the pool and dangle your feet in the water.’ Which gave me the chance to get used to the idea. Funny, I’d been living in my mom’s place for over a year, trying to direct every part of her life, and she kept resisting and got downright angry with me so many times. Then my big sis reminded me of how I learned to swim. So now my mantra with mom is, ‘first, let mom dangle her feet in the water.’ It’s so simple but it’s made a big difference in how she responds, and in how we get along.” – Daughter caring for her mother with dementia
reference:Five Ways to Help a Parent with Dementia who Refuses Care