A set of guidelines written to help anyone who is maneuvering through the very difficult process of being a caregiver for an elderly loved one.
Donna was relatively young when she had a debilitating stroke. An active real estate agent with many friends and a full life, she was suddenly unable to do even small tasks like putting on her shoes. Diagnosed with vascular dementia, she was no longer able to care for herself alone. Her only grown child who lived 2,000 miles away immediately flew in to care for her temporarily. Facing the difficult reality that Donna would never recover, her daughter moved her across the country and purchased a home directly next door for Donna to live in with a caregiver – an ideal setup. So why did Donna end up depressed, and despondent and suicidal? It wasn’t just dementia.
Donna was not consulted on where she lived, nor how her house would be decorated, or how she would dress or what she would eat. Her daughter felt that Donna was unable to make any of these decisions, and had completely taken over the design and furnishing of her home and set it up without consulting her about how she wanted it. Her food was bought for her, her clothes purchased for her, and anything else she wanted or needed was immediately taken over by her well-meaning daughter. If her daughter found her doing anything remotely unsafe it resulted in long condescending lectures about safety.
This left Donna with the feeling that nothing was her own and her life had been taken away from her. Her abilities were extremely limited, true, and her tastes in interior decorating may not have been very good, but she would have loved to have picked out some of her own belongings. Because Donna had dementia and the chore was challenging, it was assumed she could not do it. As Donna’s caregiver I found her in tears many times, saying she did not want to be here anymore. She just wanted her life back, and if she couldn’t have it she would just rather “go.” Donna’s daughter had no idea she was creating this kind of effect on her mother. She thought she was doing what was right and best for her. It’s obvious Donna was not able to make major decisions, but she could be consulted and communicated with about certain things, regardless of her mental capacity. This scenario is not uncommon and happens more times than not.
There may come a time when your parent or other family member reaches an age where they need daily assistance and care due to aging issues. This usually comes in stages, first noticing that your loved one’s judgment seems a little “off” or they have a fall and break a hip, etc. You start considering whether alternative living arrangements or assisted care is needed and suddenly find yourself in a position where you are the only one available to make critical decisions about their life and care. Oftentimes well-meaning family members take actions that end up leaving their elderly loved one feeling depressed, hopeless and resentful. We all want the best for our aging parents and are faced with making crucial decisions about their lives, and some of those decisions are difficult to accept.
Caring for or being responsible for an aging relative can be a daunting task, it is sometimes a thankless job, met with resistance, complaints and resentment. Many say they don’t care if their aging parent hates them. As long as they do what is best for them to keep them safe and cared for is all that is important. But what about quality of life and relationship?
There are ways to care for your aging loved one that do not create this type of negative atmosphere. Communication, respect and consideration of their feelings are a must at all times. Following are some suggestions, regardless of how incapacitated your loved one is.
Talk to your parents about making a change to their living situation and care. Tell them you will help them. Tell them your intentions are not to take their life over, but to assist them in living the best life possible. Let them know you will be appointed as the final decision maker regarding their welfare and care and get their agreement on this. This is a very critical step for all future decisions and it must be done. Don’t end the conversation until everyone agrees you are the final decision maker if ever there is a stalemate, promise to hear all sides and consider all of their concerns before making any final decisions for them.
Do’s And Don’ts Of Being A Caregiver:
- If your loved one wants to remain in their home and they or the family have the wherewithal to hire a caregiver, allow them to do this. Most elderly people do not like change of any kind, but especially moving to a foreign place is extremely unsettling for some. If the resources are available for them to remain in their home I am a big advocate for allowing them to do so. Sometimes this is not an option and the person must be moved, but for those who can, please consider it.
- Don’t talk about your elderly parent’s personal issues in front of them as if they are not there. Do not make conclusions or decisions without their input and feedback.
- Don’t talk to or treat your elderly parent like they are a child no matter their mental capacity. They have lived for many decades and have earned the respect to be treated like an adult who has the ability to understand and think like an adult.
- Don’t show impatience because they are forgetful, slow or repeat themselves. They may be slow, their body is old, the brain is aged, but they are not unable to do some tasks given the patience and ability to complete them. Do not take over just because it is taking too long. Give them time and space to do things. If they repeat themselves, or tell a story one too many times, don’t roll your eyes or impatiently tell them they’ve already told it, listen and respond like it’s the first time you’ve heard it.
- They love your help, but sometimes it’s too much. Please ask if they need your help before you start cleaning their home, shopping or doing tasks for them. Before you show up with gifts, food, trinkets, games, or any other household items, ask them if they want it first. Most elderly people like and enjoy the things they have, even if they’re old or dated. Newer technology often intimidates and confuses the elderly.
- They love having food brought to them, but sometimes they have already planned their meal or cooked, so call ahead and ask first. Don’t force them on to a health fad or diet, rather, turn a blind eye to the ice cream and cookies and hot dogs if that is what they want. It is not going to kill them at this age unless of course they have an illness that requires a special diet.
- Do not throw their belongings out unless you are asked to. They may have some clutter and things piled up around them, but this is how they like them. If you find a situation where so much clutter is interfering with their ability to walk or their health and safety is at risk, refer to point number 1. Talk to them about your concerns and do your best to use reason with them. If still they are not willing to change it, refer to the agreement you made about having the final decision and let them know that due to hazardous conditions you have to make the difficult decision to change it, but not because you want to rule over them. This keeps them in the loop, as it was their decision to give you the final decision authority. But do not change or rearrange their home because of your own tastes in decorating. If they say no, then please accept their answer and leave it be.
- When you say you want to come to visit, then just come to visit, don’t use the time to lecture about safety, eating, health, medications, etc. Just sit down and talk, and visit, or take them out somewhere to have an enjoyable time.
- Speaking of lecturing, don’t do it. Lecturing or badgering your elderly parent over anything will only breed resentment. Have a conversation two-way, discuss and resolve.
This is only a guideline and some points may not apply, but the basic message here is to communicate and get agreement as much as possible before acting on their behalf. As a caregiver, I use these points every day when I care for my clients, with much success. When dementia or Alzheimer’s has progressed to later stages and reasoning and communicating is no longer possible, obviously these points are not helpful. But for early dementia, and elderly people who need basic care that, otherwise, are in good condition, I encourage you to use these guidelines.