Sometimes, conditions are so deteriorated for your loved one, that remaining home, even with care professionals, is no longer an option. Placing a loved one in a care facility is a tough decision. I know I wrestled with that with Maureen, and I know MANY others who have struggled to take that step due to emotional, proximity, and/or financial issues.
I get asked a lot, “How do you know when it is time?” I probably kept Maureen in our home a few months longer than I should have, but I could not part with her. I had four separate professionals come to our home to evaluate Maureen and each said while my caregiving practices were admirable, she should have already been placed in a care facility, so she could get not just care, but professional, daily evaluations.
Some considerations for whether it is time to place your loved one:
Alzheimer’s tends to have distinct stages, but FTD not so much. Later stages are where you need to evaluate your internal support network’s capabilities. Look for symptoms like confusion, wandering out of the home (exit seeking), extreme mood swings and delusional behavior, interrupted sleep patterns, and loss of bowel control. They may even become unable to function and eventually lose control of movement, needing 24-hour care and supervision. Many FTD’ers get to a point that they are unable to communicate, even to share that they are in pain. This makes them more susceptible to infections, especially pneumonia. Aspiration pneumonia is a leading cause of death for FTD’ers – they lose control of how to swallow.
As FTD can often strike in younger people, you may still be working or raising a family. You have to assess what time that you have, your finances, your loved one’s needs, and even physical limitations. If your loved one is much larger than you, you may not be able to physically assist them in toileting, bathing, and dressing situations in the later development of the disease. Do not underestimate the toll caregiving can take on you. We are not all wired that way, and it is not a character flaw.
Are they prone to wander? Do they explore cupboards and closets and get into things that might harm them? Do they try to cook and forget the stove is on? Some FTD’ers have periods of oral exploration where they try to put things in their mouth – mistaking a small colored object for a fruit or vegetable.
Perhaps your loved one still wants to drive, and you can see they are making bad choices. Getting them to give up the keys is a challenge for most. More typically in the stories I have heard, it is the men that are most resistant to that (with some exceptions).
There are instances where your loved one may deny they have a problem or lash out in fits of anger. I know ladies who have told me their father, husband, son, etc. never got angry before but do have episodes now, and they are scared for themselves. This may be a sign that they need to be in a care facility. You need to keep yourself safe too. I often recommend that spouses have a “go bag” in case things turn violent so they can leave on a moment’s notice to a prearranged neighbor or relative’s home.
Routines are often critical for FTD’ers. They need that structure, and when it gets interrupted, it can cause a lot of angst. In the behavioral types, it can be very emotional, or even violent. In the language variants, it can become a quieter obsessive-compulsive issue – like working out a puzzle. Still, you can see the elevated level of duress.
Self-care is always hard for us to focus on in the caregiving role, but please evaluate your own state of mind. Guilt may set in at placing your loved one in a care facility. I know it did for me. With someone else now picking up some of the duties and freeing up some of your time, try some self-care techniques like outdoor hikes, massages, yoga, or quiet time to read or listen to music. Allow yourself the time to reset.
If you find that does not relieve your guilt, try seeking professional therapy. Mental health is one of the most vital services we can provide for ourselves and often one of the most neglected. Society has unfairly placed a stigma on soliciting mental therapy, yet we seek other medical attention for any physical ailment. Consider mental therapy as a tool, just like going for a walk outdoors – use it as you can.
Once you have decided that a care facility is needed for your loved one, selecting one can be difficult.
Most larger cities have senior placement specialists that can help you focus your search with criteria that you set with them. They also know what most facilities specialize in and can save you a lot of time and potentially money.
As care facilities depend very much on your region, I find, rather than recommend specific facilities, it is better to recommend locator services and tips for what to look for in a care facility.
Depending on your eligibility for Medicare, here is a search engine for providers: Find Healthcare Providers: Compare Care Near You | Medicare
Some Tips in selection and placement:
- Compare staff to resident ratios
- Is an RN on site at all times?
- Can they get their own room? Own bathroom?
- How often are you allowed to visit?
- Can you take them out whenever you want?
- Do they know anything about FTD? If not, are they willing to receive that information? Most are trained in just Alzheimer’s.
- Is it clean and in good physical condition?
- How are mealtimes conducted? What level of assistance is provided?
- Are there engagement activities?
- What is included in the base rate and what is extra and what do you need to still provide or do?