In the majority of families where there are still two parents living in the same home, the ‘well’ spouse becomes the primary caregiver to their husband/wife who has dementia. Caregiving for someone with a cognitive disorder is a full time job; especially when community supports, such as day programs and other respite services are not operating. There is simply no place for them to go, to get out, have a break, or meet up with a friend for a cup of coffee (or glass of wine).
Recently I have been working with several families where both parents have developed dementia. Thankfully in these most recent situations, they have supportive family nearby who have reached out to Elder Caring for assistance.
The question I am asked is to determine what options are available for them.
So let’s review together:
- Can they both remain safely at home?
- Can they afford to supplement private care from whatever personal support services they may be receiving from the public sector?
- Do they need 24 hour care and if so, how can that be accommodated?
- To consider any live-in assistance, the caregiver requires their own bedroom. Is this possible?
- What if it is awake overnight care that is needed? Awake care means the caregiver is awake and alert. The cost at an hourly rate of $33 can equate to $800.00, which is not feasible for most of us.
- Is there technical/video/ monitoring equipment that can be used?
- If one’s needs can no longer be met at home, would one spouse enter a retirement residence and the other remain at home, again with some care?
- Can both enter a retirement residence together and if so, could they share a room?
- What if their needs are different and one spouse needs a secure setting and the other does not?
This is not a comprehensive review of all options and each person and each situation is truly unique. What works well for one person may not for another and what is available in one city may not be available in the next. There are no easy answers.
I anticipate seeing more and more couples who both require assistance. This can be a very heavy load for their adult children and I encourage any families who find themselves in this situation to reach out for support. Speak with your doctors, the Alzheimers Society, your Employee Assistance Provider, your financial advisors and your lawyer (especially important if one spouse is the attorney for the other and no alternate has been named) and other elder care managers who can help explore what is needed for them. It can be a long road ahead, assistance in planning for both today and tomorrow will be essential.