“Maybe I really can’t manage my father’s needs at home on my own.”
If I had to pick just one sentiment to best capture what adult daughters and sons of those in the middle stage of Alzheimer’s are thinking, this would be it. The thought is born of sheer exhaustion mixed with the realization that Alzheimer’s is a formidable opponent.
Why is the middle stage of Alzheimer’s so challenging?
Because the illness is spreading which causes behaviors to intensify. Think of the entire course of the disease like a path through the woods. The early stage is very rocky, but relatively flat. The person with the illness is still able to function independently in many ways although occasional assistance is needed to ensure safety.
In contrast, the path through the middle stage of Alzheimer’s is both rocky and steep. Accompanying a family member along this stretch of the path requires significantly more energy and strength as well as the ability to strategize about the best way forward.
The major differences between the early and middle stages of Alzheimer’s disease:
- The person in the early stage who misplaces things may become angry and/or suspicious that someone is stealing from him/her in the middle stage.
- The person in the early stage who may withdraw from social situations and prefer instead to stay home may begin to wander in the middle stage.
- The person in the early stage who needed to be reminded to change his/her clothes may need assistance getting dressed in the middle stage. That same person may also develop a fear of bathing, or even difficulty eating. He or she may also begin to hallucinate.
So what do these new symptoms and behaviors mean?
Simply put they mean that the person with the illness now requires constant supervision. In other words, around the clock care.
This is a tough pill to swallow and one that often tests family caregivers of those with Alzheimer’s to the maximum not just physically, but emotionally and financially too.
For the first time since their aging parent’s diagnosis, the adult daughter or son realize that their aging parent may need more help than they alone can provide. What often comes next are feelings of guilt and worry: Guilt that they can’t do more for their aging parent on their own and worry about where, when and how to access help.
How to plan care for your aging parent in the middle stage of Alzheimer’s disease
Although making decisions about the long term care of your aging parent with Alzheimer’s is extremely difficult, the options are fairly straightforward. Let me lay them out and then I can offer my two cents on which way to go on the other end:
Option 1: Hire live-in, 24 hour/7-day a week home care (or supplement an adult day program with live-in care)
Option 2: Move mom or dad to an assisted living facility, specifically one with a floor designated for those with memory impairment
Option 3: Transition mom or dad to a nursing home, preferably one where you can verify that staff is trained in how to work with those who have Alzheimer’s and other forms of dementia
Option 4: Hire live-in or live-out home care and supplement that assistance with informal (i.e. unpaid) care provided by family members
Option 5: Proceed with option 4 until the cost of the paid care exceeds what an assisted living would cost, then transition mom or dad to an assisted living
Option 6: Proceed with option 2 (0r 5) until the supplemental care needed at the assisted living facility exceeds what a nursing home would cost and/or funds are nearly depleted, then transition to a Nursing Home
Option 7: Do nothing. Okay this isn’t a real option, but I did want to acknowledge that Alzheimer’s and all it represents can be paralyzing to the point where we choose option #7 without realizing it. If I’m talking to you, then you should know that you’re not the first person to ever feel the way you do and that it is definitely time to get some support.
Weighing the options:
For those of you with ample means – and by “ample” I mean that you can afford to pay upwards of $200,000 per year for the long-term care of your aging parent…
I would strongly suggest that you keep your aging parent with Alzheimer’s in their own home through the end of their life. Home is where most people want to be and where an older adult with Alzheimer’s does best. Again, barring and financial constraints, additional help can be hired as your aging parent enters the late stage of Alzheimer’s and equipment can be brought in to ensure that mom or dad is receiving the same level of care that a nursing home could provide.
For those of you who don’t have $200,000+ to spend per year on in-home care (i.e. the vast majority of Americans)…
Your best bet is to do the following:
- Familiarize yourself with what your aging parents’ assets are and what (if anything) you and/or your siblings can contribute toward the cost of care
- Get to know the facts about what long term care costs so you can determine how far those assets will take your again parent
- Follow the steps on the Planning Care page of this site so that you don’t lose sight of you
- Make the most of sites that provide information on housing resources in your area
So you don’t know the first thing about what long-term care costs?
That’s okay. Here’s a quick and dirty introduction:
Home Care: One hour of home care will cost anywhere between $15-$24 per hour in a major city, less in the suburbs, and less still in more rural areas
Assisted Living Facilities: The cost of one month in an assisted living facility in a major city will cost you $5000 – $8000 per month, and between $2500 – $4000 in the suburbs; rural areas may not have any
Nursing Homes: A nursing home costs between $7000 and $14,000 per month depending upon where it’s located (cities are more expensive)
Some parting thoughts:
As many of you read this (particularly those without “ample” means) you might be tempted to tell yourself that you really can manage your father’s care at home on your own, or that maybe he doesn’t have Alzheimer’s at all. This kind of thinking is understandable, but it’s also the wrong direction to be moving in…
Keep pressing forward one day at a time and keep asking questions. In all my experience in helping the families of those with Alzheimer’s disease to manage, I’ve not stumbled upon any way under, around or above the disease. Like with so many other life challenges, the only way out is through…