This is the first in a series about how dementia changes love and its related sexual issues.
"I don't like my dementia dad very much. Yes, I still love him, but I don't like him. I feel so guilty!)
"Our relationship has changed from a passionate love affair to friendly roommates."
"We were partners, friends and lovers. Now he is a stranger and most of the time, not a very pleasant one."
Yes, sadly, dementia changes our loved ones. It can take away their empathy, increases their negativity and makes them more difficult to love. It can change them from an independent, enjoyable and helpful person to someone who is anxious or even angry, insecure and needy.
It changes the care partners too. If you aren't diligent about your own care, the stress of caregiving can make you not only physically sick, but irritable, impatient and depressed as well. Since dementia turns our loved ones into emotional mirrors, they will express these same feelings of irritability, impatience and depression along with their own indifference, negativity, dependence, insecurity and neediness--and more. You see where this can go...and what it can do to a relationship once built on love. The love may still be there, but it is so overrun by less comfortable feelings that all that may be left is guilt at not feeling what you think you should!
The answer is to start with accepting that it is the disease, not the person that you don't like, that makes you angry, that hurts you, that wears you out with neediness, that.... It is the disease. The more you learn about how the disease changes your loved one's brain, the easier it will be to see that this is so.
If your loved had a broken leg, would you be upset that he couldn't walk. Of course, but you'd be upset about the leg and the extra work it causes you, not his unwillingness to walk. That's the way you have to look at dementia, if you want peace of mind.
Dana expressed it this way: "Once I accepted what dementia had done to my husband's emotions, it became important--and easier--to show care, compassion and reassurance that I would be there for him. His anxiety levels dropped and he is less afraid when I'm not there at every moment."
Equally important is taking care of yourself. Again, this isn't easy, but it is every bit as important as any other caregiving task that you have. The payoff is that when you are rested and healthy, you will be more positive and that's what your loved one will mirror instead of all of those negative feelings that an overwhelmed and overburdened care partner expresses.
Finally, let go of the guilt that you didn't do it right or the worry that you won't do it right and practice compassion. Not only compassion for your loved one, but also for yourself--especially for yourself in fact. Compassion is accepting and giving. These positive feelings give back to you in well-being and health. Compassion, accepting and giving might also considered other words for love.
Next week's blog is about the importance of loving touch.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.