One of the most challenging tasks in taking care of a parent with Dementia is to convince them that they need home care. This makes it difficult for you as a son, daughter, son-in-law, daughter-in-law to support them the way it is required. According to a study at Penn State University, around 70% of families and caregivers feel that the parent is stubborn in refusing help.
Why do they resist help? Symptoms of Dementia and Alzheimer’s (a type of dementia) cause multiple impairments in mental function leaving the person perplexed, depressed, agitated, worried, etc – all these factors cause resistance in the patient. Dementia and especially Alzheimer’s patients lack the reasoning ability, provoking you to lose your patience on what you consider as something “obvious” that they need help. The more respect, compassion, and confidence you can demonstrate that you have for your parent in respecting their preferences (especially in more minor things), e.g: in personal styling, in their meal, in watching TV or listening to music, the more they will have confidence in you and your mutual bond, helping reduce their stubbornness, agitation and aggression towards understanding their need for in-home care.
The following methods could be helpful:
By putting yourself into their shoes, you will be able to better understand their refusal.
“Nobody wants to lose control of their life, especially someone who’s already concerned about losing their independence. That’s why it’s so important to involve your parents as much as possible when you’re planning for their care.” (DailyCaring)
The more your parent with dementia sees you as someone who understands them and their daily struggle, the more likely they are to listen to you. For this to really work, your parent needs to see you as on the same side of the table, and not one trying to “put them away” or be someone else’s problem to take care of.
The more you respect their preferences (especially in smaller things) and the more open you are with them about how their condition affects you, the more likely they will accept in-home care. In this way, they will see you as a partner who is there to support them, one who is possibly struggling to balance his/her commitments at work/family while caring for their parent, and one not having the deep knowledge needed to safely care for someone with dementia or Alzheimer’s, not someone who is trying to implement things over them in spite of their wishes.
A parent with dementia who refuses help usually does so due to hidden emotions, pains, or insecurities that are the root cause for their refusal. Try to understand the core reason behind their refusal – A few examples are below:
Many parents want to stay at home and live a dignified life in their own home and this fear of being removed from their home is a deep-seated one. Once you get that cause it will be much more convenient for you to cope up with the situation
When your parent with Dementia continually refuses your help or in-home care, start asking simple questions in different ways to gain insight. These questions should be really simple and designed to help you in understanding and navigating their emotions, fear or anxieties, before assisting them. Please keep the questions to be answerable in a simple “YES” or “NO” framework.
Involve your loved ones in the process of caregiving by giving them choices – it will help make them feel that they still have control over life. You may think that choices confuse them but surprisingly they will do the opposite especially in simple day-to-day matters – for example, give them choices in their meal, in clothes, or in selecting the caregiver, and the caregiver’s timing.
The one precious thing that you can give to your parent with dementia besides home care is patience. Slowly proceed with the journey and give them time to think or to express their needs. It will give them a sense of self-esteem. Patience also allows you to listen to your parents carefully. You can come on to the main objective later (for example in-home care) by talking about other stuff which they may bring you both in agreement on a smaller task.
Another way to deal with your parents’ refusal in seeking support from you, is to refer the situation towards you. Tell them you are the one who needs help with caregivers at your parents’ place to balance your time and commitments across work, your kids, and your parents, as parents sacrifice for their children. By making any change in their lives your problem, you will eliminate their feeling a burden on you and reframe the situation as they are helping you balance your everyday commitments.
The idea of hiring a caregiver might sound helpful to you but not to your loved one. Having an unknown person to look after them in their homes may become an issue of ego or self-respect for them and they can deny it verbally or even physically.
Search for the best caregiver for your parent and then introduce him/her as your friend or your helper. Make them familiar with each other.
Start from 2-4 hours a day and slowly increase the duration to be 8-12 hours over 1-2 weeks.
Be with them in the starting days so they won’t feel abandoned with an unknown person. Support them when you find that they are having problems with the current caregiver and give a chance to staff another one if they find it hard to make things work with the first caregiver.
Building a medication “habit” for your parent with dementia is an important task for you. Your parent will ask you questions like “what is the medicine for?” or “Why are you so willing to give them the medicine?” and sound distrusting of you. Build trust by helping them understand the importance of medication even if they ask the same question over and over. Make it a part of their routine so over time it won’t be a problem for them. We would recommend keeping the medication routine to be with yourself rather than caregivers especially till the trust equation and comfort with 12-24 hour caregivers builds. Make sure you inquire about your in-home care provider’s license and caregiver’s ability to either administer or remind your parent of medications, and whether they have an RN delegation program in place. Medication reminders and administration is an important part of managing your parents’ journey with dementia and managing the progression curve.
Maintaining their hygiene and food consumption is another challenge!
They will often refuse to take a bath, brush their teeth, or perform any other basic hygiene activity. To understand why they are refusing, ask simple questions, give options (e.g. shower now or after an hour?), and most importantly keep conversations simple and direct (e.g. if your parent resists bathing, instead of saying, ‘I need you to come to the bathroom so you can take a bath and shave and I can wash your hair,’ a simple ‘Dad, we’re going to the bathroom is much easier to comprehend). Remember to ask for one thing at one time.
Build their healthy routine by including morning/evening walks or exercises for a natural appetite. Try to step outside for some fresh air and a change of environment if you can. Light and sunshine are healthy and help redirect the brain, and hence can be helpful. Include appetizers in their routine like fruits, salads, cereals, etc… Ask them what they prefer in their meal. Remove distractions from the kitchen pantry (e.g. junk food) and dining table and sit beside them while they eat. If they refuse to eat, give them some time, try to redirect, come back to find the cause, and try again later – for example, if Mom won’t eat and says she’s not hungry, you don’t need to push. Instead, try a “bridge phrase” that moves the conversation to a different place. Try telling her how much you always loved her fried chicken and ask her if she remembers how the house used to smell when she used to prepare it. Then a little later, maybe return with “Hey, how about we both have a bite of this sandwich?” Forcing them to eat their meal will only make the situation worse.
Sometimes dementia patients refuse to visit a doctor considering themselves to be fine. You can avoid unimportant appointments if they insist and try alternatives like telemedicines.
But for the important appointment, you must help them understand its importance especially when changes in meds or health conditions arise (for example, a UTI may trigger a much more uncooperative attitude towards medicines). Handle the situation with compassion and help them in feeling good about the visit
“A cheerful, calm, open and soothing demeanor helps ensure cooperation”
By paying attention to your dementia parents’ needs or preferences and balancing them with professional advice from a compassionate and experienced care provider will assist you in managing their refusal and in supporting them by providing good home care at a gradual pace that they agree to.
Try to treat them as an adult, not a kid. Give them as much dignity and respect as you can and gradually the process will coverage towards a workable model.
Do you live in the Dallas Fort Worth area? Care Mountain provides award-winning in-home care providers with deep experiences in caring for those with dementia and Alzheimer’s. We are a high-quality in-home care provider with 16 years of experience providing personalized care for 3,000+ DFW families. We have highly experienced caregivers available to support you and your loved ones’ care needs.