TO PLACE OR NOT TO PLACE: 24/7 DEMENTIA CARE
Your loved one has dementia & lives with you, but it’s getting much harder. How do you decide if, when, and where to opt for a facility?
1. Evaluate the person’s current needs, abilities, and physical safety.
2. Evaluate your own needs and as well as current sacrifices in all areas of your life.
3. Secure your legal situation, understand your finances, and review any insurance coverage.
4. Consider the likelihood of crises: the person’s, your own, and other family members’.
Care receiver’s current level of home care:
– How many “activities of daily living” does s/he require help with? (eating, toileting, meds, personal hygiene, dressing, etc.) Is it getting burdensome having to assist constantly with these?
– When at home, is s/he engaged in enjoyable/helpful activities or is s/he bored most of the time? Is this in contrast to much greater animation and positive emotion in a daycare setting?
– Does s/he have any troubling behaviors? How frequently do they occur? Are any of them a danger to yourself or others? How is dealing with them affecting you?
– Does s/he have medical conditions that require more than just pills? How likely is a medical crisis?
– Is s/he reliably safe? (falling, doing stairs, wandering, turning the stove on, leaving water on, scalding him/herself, etc.)
– How well can the person communicate? Does s/he get along with others? Your loved one will need functioning social skills to make good connections with staff and other residents. Such connections will increase your person’s own happiness as well as gain additional positive attention from staff personnel who feel they know and care about him or her, that s/he is not just a “lump.”
– How much time does the person have left at his or her current level? Your loved one’s rate of decline may be slow, but be aware that illness, crisis, or sometimes seemingly nothing at all can trigger a sudden, significant, and often permanent drop in function. How ready are you for things to to get worse? (incontinence, balance problems, loss in vision and/or hearing, needing to be fed, etc.)
– Are you as active outside the home as you were previously?
– How frequently do you feel fatigued? Are you making little mistakes you never used to make? Have you had any scary moments recently while driving?
– When was the last time you were sick? And the time before that? How seriously ill were you? Did you recover as quickly as usual? Do you have any chronic medical issues or aches and pains? Skipping checkups yourself because you’re too tired, don’t have time, or “s/he can’t be left alone”?
– You’re managing the meals, the money, and the laundry, not to mention the family pet, taxes, home repairs, and holidays. Are you also holding down a paid job? How much help do you have with all this, as well as with your loved one? If you sent out a call to family members, would they respond? Can you/the family afford significant in-home care? This is Not a journey to do alone!
– What are your expectations of yourself? (“I promised . . .” or “I should . . .”) Are they realistic in the current circumstances? In his/her right mind, would your loved one want you to exhaust yourself like this? Do you feel fulfilled in caring for your loved one? Or is it one draining day after another? Some of both? Feelings of resentment are normal, but it’s not a state you want to live in.
– Isolation, sleep deprivation, and/or depression can warp anyone’s perspective (and, oh my, progressive dementia can be Very depressing!). Seek feedback and advice from family, friends, and professionals who are familiar with your situation and have your best interests at heart.
– Do you consider yourself a spiritual person? If so, have you sought guidance through prayer or scripture or talked with a spiritual companion or faith-trained counselor or minister?
– Is anyone cheerfully/scornfully telling you “you can keep right on”? Is their perspective worth considering? Like weddings and wills, demanding situations can stir up old and complicated family dynamics. Would a family meeting with a professional facilitator be appropriate?
– With your loved one no longer at home, Everything changes. Fear of the unknown and/or fear of living alone are Normal! Remember how much you have already learned to do and have done that you didn’t ever imagine you could, and, Vital: Talk to others who have made this transition.
Last, a word about Guilt: no one person can totally take care of all of another’s needs. Period. How long have you been at it? Alzheimer’s will take the loved one; it can take the caregiver, too. What have you already sacrificed? If you give and give and get back little, it’s very hard to avoid resentment, and that’s a soul eater. Furthermore, if you spend your whole self caring for your loved one, what will be left of you after s/he is gone? You don’t want to just fade weakly and sadly away, or, worse, end up with someone having to take care of you. Do your best, and then can you let “good enough” be good enough?
This agonizing decision is a matter of balance between your loved one’s needs and abilities and your own. There is No precisely right time and no Perfectly Right Place. It is probably one of the hardest decisions you will ever make. Get all the help you can.
So . . . . Once you decide your person will need to go somewhere, how do you choose the best fit?
i.e., whittling the list down:
– location close to home: How far is too far for regular visits? Create a search perimeter.
– group home: more one-on-one; lower activity level; and, in Virginia, 8 or fewer residents
– assisted living: dedicated dementia unit as part of a larger facility, or, solely dementia care
– senior living community with on-site accommodations for those needing extra care; i.e., if you’re a couple, you Both move out of your current home. There are many different types of community approaches, and that is a whole separate area of research beyond the scope of this overview, which focuses on the decisions around moving only the loved one out of the home.
– Seek out resources for advice and help: family, friends and friends of friends, colleagues, neighbors, church/synagogue/mosque, city/county agencies, support groups, websites, conferences/seminars/workshops, daycare personnel, books/newspaper and magazine articles.
– List facilities within your geographic range.
– Schedule visits to facilities of interest. Take a friend with you, preferably someone who has had experience with these types of places. It’s another pair of eyes, it’s someone with whom to discuss your reactions, and it can provide a much needed morale boost. (Don’t do too many in one day!)
– Create a set of questions (see p. 4) to ask the staff and take notes on their answers. Afterwards write down your impressions. Keeping everything in one notebook or folder helps.
– Go to facility parties and special events. Get the lowdown from people who have loved ones in these facilities. Watch how the staff interacts with the residents.
– Be wary of any place that offers a discount if you sign up right away. This is a Monumental decision; you don’t want to be rushed into it, and you definitely don’t want to discover it’s the wrong place and have to move your loved one a second time unless it’s for a medical necessity.
– If you find a place that seems right, find out if there’s a waiting list, what’s required to get on it, how frequently openings occur, and how the list is managed, i.e., how long they’ll give you to say yes or no when an opening occurs, and if you say yes, how soon you’re expected to move in. What if you say no for that particular time—do you lose your place in line?
– Rank your choices. If circumstances change and suddenly you need to move quickly but your #1 place doesn’t expect to have an opening for 6 months, it’s good to know where else you could go without having to lose valuable time checking other places out.
– Keep your family informed about how your loved one is doing and about what you’re discovering about facility care. Not only will your relatives appreciate being kept in the loop, it’s wise to gently educate them. Unless someone has been a caregiver or lived in a house where someone close filled that role, most people have No idea how hard the job is. But when they “get it,” they’re able to make better joint decisions with you and will be more likely to pitch in to arrange the support you need. Caution: No whining, no guilt-tripping, no pleas for sympathy. Keep it clean!
– Strategize with family and professionals about the best way to gain your loved one’s cooperation in moving from the home to the facility. When it comes to how you’ll actually talk to him or her, best to keep it short. Then, too, you’ll probably be nervous, so be practice ahead of time both the words and tone you want to use. It’s also wise to have a family member or someone else with you.
Legal and financial matters
Hopefully you and your loved one took care of vital documents before or when the dementia problem was first diagnosed. These include:
– Advanced Medical Directive
– Durable General Power of Attorney, and, later on . . .
– Doctor’s letter(s)—might need more than one–verifying the dementia diagnosis and stating the
patient’s inability to make informed decisions regarding his or her own health care.
– Durable Do Not Resuscitate Order – optional, but vital if this is your wish
– Medical Orders for Life-Sustaining Treatment (MOLST) – optional to further specify what
procedures should not be taken in the case of a medical emergency. This document is helpful,
especially to EMT personnel, but be aware that it is not yet recognized as a legal document in
the state of Virginia. (It is, however, legal in Maryland and 36 other states.)
If you do not have these documents, talk to an attorney to get in place those that you will need to negotiate legal and health care decisions on your own, acting in the person’s behalf. You Must have these papers in order to be guaranteed a say in the care decisions ahead of you. Money spent on a lawyer now will save you endless hassles later!
Assess your financial situation. Figure out how long the budget could sustain the monthly cost of facility placement. Be sure you have the written authority to manage the other person’s assets, should you need to rely on them to pay for health care. If you’re not sure, call the bank and investment companies and see what is expected. Beware: each may require that you fill out their own separate forms. (Note: All this can seem overwhelming and scary. Do not hesitate to ask help from a trusted relative, friend, or professional for support as you work your way through this.)
If your loved one has long term care insurance, ask a financial advisor or knowledgeable friend to read the policy over with you so you understand the terms. There is usually a 60-90 day period at the beginning where you have to pay all the bills (and will not be reimbursed) before insurance kicks in. Create a notebook for dealings with the insurance company, and keep an ongoing record of any verbal or written contacts you have with the people there.
Keep an organized record of any payments you make for professional services for your loved one, especially since unreimbursed payments for medical and long-term care may be deductible on your taxes.
The trouble with crises is that you never know when they might hit, yet the process for deciding to place someone in a 24/7 is complex and takes time; likewise for finding a suitable facility and moving your person in. A stroke, fall, accident, illness, death in the family—to have to do the job in a hurry, to perhaps end up in a second choice facility (via hospital and rehab?), turns your already difficult job into a near nightmare. On top of that, for a loved one with trouble understanding things normally, the excess stress of coping with pain, sudden new inabilities, and/or a host of new people in unfamiliar environments is devastating. While times are relatively calm, accident-proof your house, maintain your own health, and by all means seek help in doing the work to sort things out.
The whole thing is hard, it’s just plain hard, and made worse if your loved one doesn’t appreciate your efforts. The good news is that it’s doable, that there are people and resources to help get through it, and, done diligently, your loved one will be better off and there will also be more of you available to enjoy life both in the midst of this process and later on when the caregiving journey is over.
~ Myra, 11/5/15
8 years and continuing
Possible questions to ask when visiting a facility
– Is this facility totally dedicated to dementia care, or does it have a separate dementia unit/floor?
– What’s your gut reaction to the place? Are the walls and décor welcoming and cheery with plenty of light? Are things so fancy that you get the feeling that the top priority is actually to impress the families of the residents? Or, the other extreme, do too many things look chipped and old and dreary? Does the layout of the hallways make it easy for dementia patients to find their way around?
– Is there a courtyard for residents to walk around in? How big is it? Does it look well kept? Are the residents making use of it, weather permitting?
– What is the staff-to-resident ratio?
– How many of the residents currently have a private duty person to help them? (Four hours of private duty help could easily run an extra $100/day; it’s seldom covered by insurance and can add significantly to the basic cost. Your person may not need that now, but it could be a concern later on.)
– Does the facility have the capability to do 2-person transfers as necessary? (i.e., if someone can’t walk unassisted, it takes not one but two people to get them up and down, a drain on staff resources.)
– Do they have a nurse on duty 24/7? If not, what’s the arrangement?
– What other medical services are available and how often? What about a barber and beauty shop on site?
– How’s the food? (If you go at mealtime, ask if you can sample some.) Do those who can feed themselves have their own dining area, while those who need a lot of help have more privacy? Is there an additional charge if your loved one has to have help eating?
– What does it cost to live here? How is that handled? Do they bill insurance, or will you have to take care of that part yourself? Are room furnishings provided for free and/or could you bring your own?
– Barring the need for serious medical procedures, can they take your loved one to the end of the journey?
– Are there “levels of care”? (The greater the impact of dementia, the more care is required, especially in the late stages) Is there an additional charge for each increasing level?
– Are there various extra fees—for example: incontinence pads, wipes, laundry, administration of medicine, especially if injected; etc.? Can you bring any of the supplies yourself to avoid some of these charges?
– Is there an annual price increase, and/or are they anticipating a general price increase in the near future?
– How soon can they take your loved one? Is there a waiting list? How does that work?
– May you bring the family dog to visit?
– Can you talk to your loved one over the phone?
– How do they keep residents’ personal possessions secure?
– How do they handle behavior problems—of your loved one or of other residents threatening him or her?
– What sort of activities do they have for the residents and how frequently do they offer them?
– Can you meet the activity director? Is s/he enthusiastic and seem to be fond of the residents?
– If you get to see an activity in progress, note the quality of the participation. If everyone’s sitting there looking passive and lifeless, ask the person in charge about that.
– What extra activities do they offer the families and the community, like holiday gatherings or educational seminars?
– What credentials and expertise do they require of new-hires? Do they do criminal background checks on all their employees?
– What kind of initial and ongoing training do they provide for the staff?
– How long have the on-the-floor caregivers been working here? And the people in the more responsible positions? Frequent turnover can be a warning sign.
– How do you feel about the person showing you around (usually a marketing specialist)? Be sure to meet the director and get a sense of his/her approach. Particularly important, what do your instincts tell you:
Does s/he seem genuinely warm, both to you and to the residents encountered during the tour? Is s/he mature enough to handle this very difficult job? Or did you go away feeling s/he was more interested in securing your business than in acknowledging how hard this decision is? When you’re at a support group or a facility party or talking to folks who know the director or facility staff members, see how others feel about their competence, compassion, and ability to communicate with families & with staff.
So many questions! You won’t get to all of them in a single visit, but as you gain more experience visiting these places, that may not matter. Remembering that there’s no such thing as The Perfect Place, focus on the questions most important to you and for your loved one. Done thoughtfully and as thoroughly as time and energy permit, “good enough” is good enough.