Our Story

Part Seven: Addendum

In Part 1 – 6, I mentioned issues that Marie and I faced as we proceeded on this journey and I discussed the options we used to address them or overcome obstacles.  Since we did not use every option available to us to take care of problems/needs as they arose and to give you a broader knowledge of the help that is available to you in caring for your loved one, below is information that you may find helpful.

Care Options

• Care by You: Under this option, you have the responsibility to take care of your loved one on your own. 
  • Since I had no medical background, and at the time I cared for Marie at home, had little or no knowledge of dementia, I hired a Care Manager to assess her needs and suggest solutions to issues that arose. Just knowing that I had someone to confer with removed a significant amount of the stress that I was feeling at that time.

• Adult Day Care:  For the most part, this option is needed by family caregivers who work during the day (but those who don’t work or who are retired can also find this option helpful so they can see their dentist/doctor or simply shop for groceries). Those who work, usually take their loved ones to the center before they go to work and pick them up at the end of the day. While at the center, their loved one receives wonderful socialization opportunities, meals, personal care, and are involved in activities that are of interest to them. One important thing to know, however, is that many of these centers only accept people who are in the early stages of dementia; which means that you will need to find other arrangements once your loved one reaches the middle stages of the disease and beyond. And, that can cause a disruption for your loved one, since continuity and familiarity are important to people who have these diseases. Consequently, before you select a day care center, you should inquire as to whether they have a limit on the length of time they will care for your loved one. (Insight does care for individuals in all stages of the disease - from early to late!)

• Home Care: Care in your home is provided by Home Health Aides, whom you hire for certain time periods (usually in 4, 6,or 8 hour shifts) to provide care, or assist you in providing care, for your loved one, including personal hygiene, meals, entertainment, exercise, and light house work.  This sounds great, but in practice, I found it difficult to find someone willing to work just four or six hours. Essentially, the Aide is looking for full-time work and four or six hours is not giving them that. In addition, if you want to care for your loved one at home through the end stages of the disease, you will eventually need to cover three shifts a day, which makes this one of the costliest options.

• Memory Care Facility: Under this option, your loved one lives at a facility that is wholly or partially dedicated to caring for dementia patients. The staff provides 24-hour care, which includes personal hygiene, meals entertainment activities, and help in taking medicines. Also, like Home Care, since care is being provided 24 hours per day, this option can be somewhat pricey. To make it more affordable, however, the facility assigns responsibility for a certain number of residents, or for certain tasks, to each staff member. Consequently, the cost is easier on your budget, but your loved one does not have the one-on-one individual care that is provided by Home Care, and you need to live separately (which is very difficult after living together for many years. 

No matter what option or options you select, keep in mind that your loved one needs you to stay involved, to oversee their care, to make sure that they have everything that they need, and to advocate for them if required.  

 

Other Things to Know:

Also, there are the more mundane things to be aware of; those that also require your attention. For instance, when your loved one is released to a rehab center for a few weeks following a hospital stay, or is transferred directly to a memory care facility, MAKE SURE THAT YOU HAVE STICK-ON OR IRON-ON NAME LABELS FOR HIS OR HER CLOTHES OR YOU MAY NEVER SEE THOSE ITEMS AGAIN. Everyone’s clothes are washed together and sorted out afterward. In addition, even the labels wash out over time. After several months, I found it easier, and more successful to use a black magic marker to write Marie’s name on the inside of her clothes (e.g., on the manufacturer’s tag, washing instructions tag, or just across the material inside the back of a shirt or pair of slacks). No one sees it, your loved one doesn’t care, and you don’t end up inadvertently providing clothing for the whole facility.    

About this Story
This is the final part of our story intended to reach out to members of the LGBTQ community of Washington, DC and its suburbs. We want you to know that you are not alone, and that you and your loved ones are welcome here at Insight.

Read More: Part One, Part Two, Part Three, Part Four, Part Five, Part Six