There is a phenomenon rarely discussed about in articles about Alzheimer’s. Children or spouses of folks with Dementia manage to get through the whole grueling process of getting a loved one admitted into a memory care program and at the last moment, they tell their loved one “well, it’s your decision” and they waver in their resolve. Why is it so difficult to stay strong in your resolve when making decisions for your loved one with Dementia? The following factors may play a role.
Related Blog: How and When to Talk to Mom About Her Memory Loss
1. Exhaustion with the process at the precise moment when you most need to be strong.
Unfortunately, by the time that you’re at the point of signing the papers to admit your loved one into a memory care program, you may be at your lowest point energy-wise and unable to cope with the pressure. Remember that this is the final stretch and that although you may want to avoid taking the final step, it may be easier for all involved for you to not give in precisely at this moment. It may be worse to go through all of the steps involved in getting your loved one to this final decision making step than to change your mind later on.
2. Societal guilt over the paradigm that you should be taking care of your loved one yourself and that anything other than that is substandard treatment.
Beware of cultural expectations that state that you must care for your parent at home, without taking into consideration the diagnosis and the course of their illness. It is easy for others to make such global statements when they are not in your shoes. Remember that it may be better for you and your loved one to be cared for by someone with the proper training and qualifications in a stimulating environment. In-home care may not be ideal in the long run, especially in regards to safety concerns such as falling, wandering off and lack of stimulating activities appropriate to this particular diagnosis.
3. Role expectations of children or spouses and wanting to respect your loved one’s autonomy
If you are the child or the spouse of a person diagnosed with Alzheimer’s you may be used to interacting with your loved one in a specific way, which may include wanting to defer to them based on your respect for their role in the relationship in reference to yours. Remember that caring for someone with a worsening diagnosis of Alzheimer’s often leads to role reversals. Children and spouses who may have, in the past, acquiesced to their loved ones’ wishes, may need to stay strong in their resolve to do what’s right for them, even if uncomfortable in this new paradigm.
4. Over-Identification with your loved one’s perceived loss of freedom. None of us likes to lose our sense of freedom
Although attending a memory care program can be perceived in this way, remember that it is also a way for your loved one to continue to be mentally stimulated and taken care of in a safe and dignified manner. Most importantly, don’t forget that it is not the program which is removing your loved one’s sense of independence, but the disease itself. The program may be the best way for your loved one to maintain as much freedom as possible within a controlled and safe environment.
5. Denial and wish for a return to a sense of normalcy
Wanting things to be “normal” is a natural desire for most people, so don’t beat yourself up for wanting this very challenging situation to go away. It might be helpful to allow yourself the space to grieve and remind yourself that you may have to find moments of normality within the new reality. Finding ways to effectively cope with the new normal will help you and your loved one in the long run.
6. Desire to avoid confrontation with a loved one
Confrontation with a loved one, especially an ill person, can be anathema to many people. Remind yourself that when you insist on the proper course of action, you are actually advocating for your loved one, when they are not able to do so.
7. Concern about the negative portrayal of paid caregivers in the media
Assisted living programs have often been portrayed negatively in the media and many folks are not aware of how hard many such programs have worked to change the paradigm and the experience of folks engaging in such services. Remind yourself that exploring such options is not a commitment to make use of such services and that you have the right to give a program a trial run for a reasonable amount of time and then change your mind if it does not work out for you or your loved one.
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