Placement comes with a ton of emotion. Try to remember never to promise your loved one that you will or will not place them into a facility. This goes for the world outside of HD, also. We can not tell what the future holds, we do not know how our own health will be when the time comes for more physical caregiving demands. Something that is fair to say is, "I will do my best to keep you home until I am unable to take care of you." You can also say, "I will be by your side and I will do my best to honor all of your wishes."
Here are a few general questions to ask a facility that you are considering for care:
What types of care services and support are available? This can be a simple or complex question. If your loved one has a feeding tube, it is essential to ask about how they can facilitate their needs. Also, you may want to know if there is someone AWAKE 24/7; in some smaller care homes (typically nonmedical) staff can sometimes rest during the overnight shift. You may also want to know about physical therapy, massage, music therapy, and other quality-of-life additions.
Can you accommodate the specific health and personal care needs of my loved one? This is particularly important to families impacted by HD. Falls happen, but it is great to know if they are equipped to supervise and calmly and effectively react when needed. What do their showers look like? Does everyone receive supervised hygiene care?
What other residents live at the facility? It is always nice to know if there are people of the same age group, physical abilities, and even common interests. Do most of the people spend time in their rooms or doing activities? You may easily be able to see this on your own if you do a tour of the places you are interested in.
Do you have waivers available for residents on state insurance, and for young adults? Some self-pay facilities offer a state insurance waiver. This means that if your loved one is on state insurance, and of low-income, they can submit a waiver to the state and be paid for the care of your loved one. The facility will know the details, if you qualify, and how to proceed if you do. Commonly, facilities are licensed to provide care for people over 55 or 65 years old. Some facilities require (by the state) to have a waiver completed for anyone under their specific liscened age. If your loved one is young and they the facility says that they only accept people over 55, you can inquire about a waiver.
What is the staff-to-resident ratio, and what are your staff's qualifications? This is beneficial to know because of the supervision needed while eating, ADLs, and overall stimulation and activity time.
How do you handle medical emergencies or urgent health issues? It would be important to know if your loved one does not have a DNR or develops pneumonia. Protocols are important, and if implemented correctly, they can put you at ease when they are the ones monitoring your loved one.
Are there any restrictions on visiting hours or the number of visitors allowed? Some nonmedical care homes have a less strict policy on visiting hours. Most places do have times when they ask people not to visit, mainly for the peace in the evening needed in the facility. You can always ask for slight adjustments; for example, if your loved one is a night owl and you work into the evening, you could ask yourself to visit and maintain a very quiet atmosphere. Avoid overstaying during those times, and try to avoid bringing in extra people.
What are the costs associated with care, and what is included in those costs? Sometimes, facilities will have tiers of payment depending on what your loved one needs. If they do have a tier system, it will be shown to you what each tier includes, like daily showering and cleaning of the personal space, three meals and snacks, vs. 24-hour care with brief changing, repositioning, oral care, and pureed foods. Be sure to ask what your insurance (if applicable) covers or if it is all-inclusive. Other related questions are: Is a beverage thickener provided? What about the briefs, wipes, shampoo, etc.??
How does the facility promote and ensure the residents' independence and dignity, and what activities are offered? Some care homes/facilities provide outings, most though, at least provide activities. Sometimes, it's puzzles, a movie, and snacks; other times, it's nail painting, crafts, and ball play. You can absolutely ask to see their activity schedule. Most places are very adaptive to the needs of each person. With HD, we know that getting ready for the day, making decisions about what they want to do, and completing tasks like folding towels take longer...Ask them if they can accommodate the time it takes for your loved one to continue to do the things they enjoy doing for themselves.
Do residents have their own bedrooms? If not, what is the maximum number of people in one room? Also, inquire about shared bathroom use, if aplicable.
Can residents personalize their living spaces? Wouldn't we all like this? I think so. Can they put up pictures on their walls or frames on the dresser instead? What about LED lights? Get all of the details so you knowit will be a comfortable space for your loved one.
How does the facility handle complaints or concerns raised by residents or their families? This may come off as a negative question, but the reality is that you want to know how to figure out a solution to a need if one arises.
How does the facility ensure that clothing and other personal items don't get mixed up in the laundry, etc.? Knowing if they handle personal laundry or if it is up to the family is good. If they do the laundry, do they do it separately or label everyone's clothes? Same goes for blankets, pillows, and even brushes and shoes.
What is the process for assessing and updating a resident's care plan? Do they have medical staff who do evaluations? If so, how frequently, and are they knowledgeable about HD? Care plans should be adjusted as the needs of the 'patient' change. Care plans are what every staff member follows when caring for your loved one. If they are pocketing food, that needs to be added to the care plan immediately so staff knows to help clear their mouths, etc. If they do not have staff versed in HD, are they willing to consult with your HD specialist?
How does the facility accommodate dietary restrictions or preferences? This is important for people at different stages of HD. It is essential to have medical reasons and professional support (i.e., a care plan) for the changes needed in the type of food your loved one tolerates. High calories, thickened liquids, blended, etc., are all dietary accommodations. Also, ask about what food is provided and if you can store some of your loved ones' favorite snacks in their room to be eaten with or without assistance.
Does the facility offer care from where your loved one is in their current stage and all the way through to their end of life? This is particularly important for people who don't want to move their loved ones again. They may request that you move your loved one out of the facility at the end of life, which can be very stressful on individuals with HD and their families.
What are the policies regarding end-of-life care? HD, as we know, is progressive. When you initially place someone in a care home, their needs might differ more than a year later or at the end of life. Familiarize yourself with the amount of care the facility is willing to perform. Do they offer in-house hospice services? Can you utilize a hospice care team outside of the care facility? When your loved one nears the end of their journey, are you allowed to come at all hours of the day to sit with them? Will their hospice team work with your HD speciallist to help manage medications?
Placement is sometimes challenging, even if it provides much comfort and support. Continue to add to these questions and be as prepared as possible when you start looking for a home for your loved one.
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