I have written several well received blog posts on having a parent with dementia. The more I talk to people, the more it becomes apparent just how many families struggle with this illness. There are different struggles for different situations. One of those is when you live far away from your parent with dementia.
When your family lives far away it can be very hard to tell what is really going on. If your parent with dementia is living with a spouse, that person may be in denial or be trying to protect you from the suffering of your parent. The caretaker may be fearful that it will be thought that they are not doing a good job as caregiver. The person with dementia may be fearful of being put into a nursing home and beg the caregiver to protect them by not revealing the details of the illness.
On the other hand, if you are far away you may be in a situation where the caregiver is calling you all the time to complain and ask for things. It can be even more challenging if you try to help and they refuse the help. If you have siblings it can bring up old sibling conflicts as you try and work together or it may mean you aren’t able to work together at all.
So how can you deal with the stress of being far away? My first suggestion is to acknowledge it. Just because you are far away and do not see your parent in person often does not mean that their illness doesn’t affect you. Secondly, you should negotiate how decisions will be made for the parent who is ill. How can you talk to the caregiver? When should you act and when do they want you to just listen? When might you have to step in and take control even if it is against their wishes? How is each sibling involved? Thirdly, if they allow it you should be in contact with their medical provider. The doctor can give you an unbiased account of what is going on medically for your parent. Fourthly, there is almost always an Office of Aging in the community, make contact with them. They will often go to the home and do a free assessment of your parent’s needs and evaluate what services your family might be eligible for. They may even assign a case manager to help your family navigate services.
There is a great book called “When it is Time”, which talks about how different families made the decisions on how to care for their elderly parents. It gives some great advice and may help you feel less isolated in your experience.
Dealing with an aging and ill parent may be one of the most difficult struggles you experience in your life. As always I urge you to do what you need to do to take care of yourself. It is okay to think about yourself first sometimes.