Inside the Mind of your Loved One…. Part 2 of 3
Last month’s blog discussed some of the initial steps you can take to evaluate whether your loved one needs help due to cognitive decline and what help you are willing to give.
This month we will explore why your loved one may be refusing help even though they clearly need it. What could they be thinking or experiencing that could be getting in the way of accepting additional support?
First of all, none of us knows how we would handle a diagnosis of dementia or Alzheimer’s. It is not easy to hear. I think if we could take a moment and empathize and imagine ourselves in that doctor’s office, it is not a far leap to think it would take some time to process it.
Understanding this is important in helping your loved one work through this in order to start getting them some help.
On the other hand, you may not be able to get them to the doctor to receive a diagnosis. Why not? Well the same fears and “coping” mechanisms apply.
Here are some of the reasons for resistance that can get in the way of your loved one accepting assistance:
They don’t remember that they don’t remember: If someone is having memory issues, they may truly just not remember that they forgot something. Even if you point it out, they may not believe you because it is not going to “jog their memory”. It just doesn’t come back. If they are functioning well in other areas, it can be hard to convince them that they put the keys in the fridge and were four hours late for lunch. Even if a doctor has diagnosed them they may not remember the visit.
Guilt: Your loved one may feel guilty for a variety of reasons. They may feel that they brought this disease on by something they have done in the past, or because it runs in their family. That is compounded by more guilt in becoming a burden to their family. They don’t want their family to go out of their way through additional cost/expenses as well as having to be taken care of.
While we can clearly reason that this disease can happen for a variety of reasons and that it is not their fault, it can be hard for the person in it to see. If this is the case, you may be able to address this and try to make them understand that not accepting help (medical or otherwise) will not help with costs or care. Instead it could make it worse if this is put off and strain the family further.
Shame: Dementia and Alzheimer’s still have a stigma and fear around them. Some fear the perception is that the person is weak for having gotten this disease. “The very idea of being ‘demented’ had connotations with the mental asylum and so if someone had noticeable symptoms, it was kept hushed up. The idea of being ‘put away in the madhouse’ or left alone in a nursing home means people might not want to draw attention to their illness and so deny they have a problem.”
Denial: Oh denial is a big one and it comes in a few flavors. It’s the “ I don’t want to face something that is overwhelming so let’s pretend it’s not happening and maybe it will go away.” - type of coping mechanism.
Ironically, Alzheimer’s doesn’t forget and will continue to come to your door.
Denial Flavor #1: Can still fool people: In the early stages, when it is not yet as noticeable the person can use their coping skills and cover up their memory loss. They can act like they remember you, but are just playing along until someone prompts them with your name and who you are. If done skillfully you may not know they were doing this. It will become harder to do this as the disease progresses, but they can fool you for awhile. However, deep down they are not fooling themselves. They know something is wrong.
Denial Flavor #2: It’s just part of old age: “What is the big deal? I always lost my keys and I never remembered birthdays. I have always been a bit forgetful. This is what happens as you age.”
Well not quite. None of us should expect to become more forgetful as we age. And there is a difference between forgetting an appointment and not knowing how to get to an appointment
Denial Flavor #2: Death sentence – no hope: Since there are no “cures” or really any pharmaceutical drugs some people don’t want to know. They may think - what is the purpose of knowing anyway? I’d rather not address it until I don’t remember anyway. Why stress myself out about this.
While it is true that there is no cure, it is not exactly true that you can’t do anything about it. These folks may need to be informed about their options.
Mid to End Stages: As the disease progresses, your loved one is not going to be able to reason with you and be able to participate in the decision making. The disease not only affects their cognitive abilities, but their sight, hearing and they can hallucinate. If this is the case, it is you who need to accept this and move forward to get them the help they need.
Of course, I am not able to list every possibility for resistance here, but one of the important takeaways is to try and get to their core issue.
How do you work with this?
Give it some time: If it is a recent diagnosis, you may need to give them a little time to process it. Be ready to talk about it, but more importantly be ready to listen. It may be worthwhile for them to be able to talk to a third party, such as a therapist where they can be more open to share their feelings. There are also Alzheimer support groups out there and that could be helpful for them to talk to other facing the same disease.
But you can’t give them too much time as time is not your friend here. Every day the disease progresses and it becomes harder to address their care and to have them participate in the decision making. So you do need to keep an eye on how long they stay resistant.
Find the core of the issue: While listening or talking, try to identify the core issue of what is holding them back. Then try to address that specifically. For instance, if they don’t think there is anything to be done, try and give them some information on treatment options.
Deal in facts: If they are in deep denial and perhaps think it’s not bad or they don’t have it, try and present facts to them. “Mom last week you lost your phone four times, left the keys in the fridge and forgot to feed the dog for two days.”
You may also have to have a doctor speak to them or close friends about what they have noticed. Not to be done in a judgmental fashion, but in loving and firm way.
Step Lightly: Alternatively, you can present the disease in a different light that they can accept better. Instead of saying they have Dementia or Alzheimer’s. You can “explain that their memory problems are because their brain isn’t working as well as it used to, and they may be more willing to accept it. Some carers admit that so long as their loved one knows that their memory ‘isn’t what it used to be’, that’s a step along the road to a certain degree of acceptance.” 
Get informed: As I have mentioned a few times, get informed. There are so many resources these days. And there are several good books, such as Memory Rescue and The End of Alzhiemer’s. Just changes in lifestyle can help. Hope is important.
Understanding some of the reasons you may be meeting resistance can be an important first step in having those walls come down.
Dealing with resistance and denial can cause stress for caregivers and can further strain a relationship. It can also prevent that person from getting quality of care and then that has an impact on the quality of their life as well as the caregivers.
As a caregiver, you need to evaluate what the situation is and whether you can work with your loved one. Even though it is ideal and best to be able to have your loved one participate in a productive way, realize that sometimes despite your best efforts and intentions you may not be able to get them completely on board. In the end, you need to keep yourself and your loved one safe.
In the next part of this series, I present some ideas on what you can do when your loved one refuses help.
Stay tuned for next month's blog!
In the meantime – if you are a caregiver and need some support, please consider trying one of my caregiver groups. They are held virtually so you can get help and support from the comfort of your own home. These are starting soon so don’t delay!
6 week Caregiver Self-Care Support Group - For Caregivers who want to focus on their self care
6 week Dementia/ Alzheimer's Support Group - For caregivers who want to share their issues and wisdom with others
And as always, check out my website: www.ChameleonWellness.com and
Sign up for a free 15 minute consult!