Housing

Options for housing include: having your loved one live on their own (with or without home health aides), having them live with you or another family member or friend (with or without aides), having them live in an assisted living facility or nursing home. Eventually, hospice care might have to be considered which can be at any of these living environments.

Living at their own home.

Much can be said for having your loved one live in their own home and I personally think it is advisable until it is no longer safe to do so. A lot depends on their condition, whether they are living with someone else, the abilities of that caretaker, and whether they have help.

In the earliest stages of dementia, living at home is generally feasible, although that might depend on their physical health, such as whether they are in a wheelchair, have other medical conditions and the like. Yet, as their cognitive condition deteriorates, they will be less able to do what is called the “ADLs” – Activities of Daily Living – such as bathing, cooking for oneself, getting dressed and the like.

Things can be difficult if your loved one is living with someone else who thinks they are taking proper care of your loved one and is even well-meaning, but that you realize is not properly taking care of them. Part of this can be the “caretaker” underestimating dangers such as leaving your loved one alone in the home when they should not be left alone. How do you deal with this awkward situation, whether the caretaker be your other parent, a sibling or someone else?

It is not easy. Honest direct conversation is clearly the way to go. If someone other than you communicates better with the “caretaker,” then have them talk to the person on your behalf. Suppose your loved one’s caretaker will not listen? Then what?

States have different proceedings that can be brought when one believes that another is not adequately being taken care of. For example, In New Jersey you can apply to be a person’s guardian of the person. You must file certain documents, qualify before the County Surrogate, get official documents naming you as guardian, “Letters of Guardianship” and agree to terms and conditions. 

Being a Guardian of the Person is not the same as being guardian of their estate, which means their assets. Often people apply for both, but being guardian of the estate has many requirements like regular accountings, having a bond put in place and many more. It may be difficult to properly take care of them if you or someone else is not appointed as guardian of the estate. If you are considering an appointment as guardian, it is advisable to retain an attorney familiar with these proceedings. New Jersey has a great website with guides, tutorials and forms on it at https://www.njcourts.gov/courts/civil/guardianship.html?lang=eng

New Jersey has a Guardian Monitoring Program to make sure that guardians are doing things properly and not taking advantage of incapacitated people.

Living with you or another loved one.

Moving in with someone with dementia or having them move in with you or another is a very big decision. In some families, the decision may be quite a natural one where “everybody always knew mom would move in with so-and-so.” In other families, the decision can be much more difficult. Everything has to be considered from the individual’s personality and availability to your loved one’s desires. One thing to remember is that unlike the situation with the elderly where it might be natural to have an elderly mom spend a couple weeks or months here and another couple of weeks there, it is recommended that those with dementia not be moved about, because of the confusion it creates.

Families must keep a couple of things in mind. Just because one person was their loved one’s “favorite” does not mean that person should be the one. In addition, just because one sibling doesn’t work outside the home also does not mean that that person should be the one. Everyone needs to talk to each other, be practical and be reasonable.

I certainly thought of having my mom move in with me. It was always assumed that was what would happen in our family. Yet, dementia added an element to this notion that wasn’t anticipated. My 2-bedroom loft apartment was hardly a safe environment for her. I was working full-time. She was extraordinarily physically fit and healthy at the time with the exception of her dementia and we honestly believed she could easily live for eight or more years, which would have made around-the-clock care cost-prohibitive. I still thought about it often and felt guilty about the decision to have her move to a dementia unit at an assisted living facility and later to a complete “memory care” facility.

People also forget that it is not just living day-to-day that is involved when you live with your loved one. You need to keep them engaged, fed, bathed, and take them for their medical appointments. There is generally more involved than taking care of an average child because they are adults. They may also have other things, such as being in a wheelchair or having dietary considerations or even more complicated medical care that you might have to tend to. In addition, the person that decides to live with your loved one must consider that they are taking all these things on top of already attended to matters, so additional help may be necessary. 

Assisted Living Facility.

Assisted Living Facilities describe a broad group of facilities. Sometimes these places are comprised of one large building, a group of buildings or even separate “homes.” Assisted living can be everything from very minimal assistance, to care that is just short of a nursing home care.

When dealing with loved ones that have dementia, the big consideration is whether the facility is a total “memory care” facility or whether they have a memory care division, floor, or wing. What is “memory care”? “Memory care" are facilities that are particularly designed and run to take care of individuals with dementia and dementia-related diseases.

Many elderly folks need help with things like cooking for themselves, dressing and even possibly getting around. The difference with a memory care unit tends to include nursing staff and a physical facility specially designed for the added difficulties with memory loss.

Whichever type of assisted living facility you choose, there are certain considerations you need to make:

1. Safety: Safety for those with dementia has the added element of them not understanding dangers that those without dementia understand. Because of this, you must consider how well a place is “locked up” and pay extra attention to the physical plant.

2. Activities by the residents. My limited experience showed me that different places had different ideas on activities for the residents. At my mom’s first facility, the staff actively had the residents participate together as a group in the activities throughout the day. That was not to say that the residents couldn’t opt out of activities, because they did. At her second facility, it did not appear that active participation was as encouraged. Honestly, it appeared that most of the time, other than meals, dressing, and bathing, the residents were sitting in one big room watching tv.

3. Cleanliness is obviously important for not just the common areas, but for the residents’ rooms and how they address your loved one’s hygiene.

4. The Food. When viewing various facilities while making our decision and including the two places that my mom stayed at, the food service was all over the place. 

5. The Administration. I honestly believe that your loved one’s happiness at a facility is primarily dependent on the staff, but realize that in this industry, there is a constantly changing staff - so do not let your decision ride on one particular person.

Safety - How “locked up" the place is.

“Wandering” is a big issue for those with memory loss. Since these folks are not aware of the danger they are putting themselves in while “wandering,” you need an extra safe facility.

The first facility we had my mom in was lovely. There was a special memory floor in a large facility.  The one elevator would go up to the memory floor and you had to go through a second door to get in. To get out, you needed a staff member to dial a code that then led you to the elevator. Two other elevators were prominently on the floor, right next to the area that was often used by the residents, but only staff used these elevators. Since the facility was new when my mom lived there, the anticipated receptionist on the floor right by the elevators had not started.

Two problems were presented with this arrangement. The first was that the facility programmed a relatively simple code for the elevators and my mom, by just punching at all the numbers, was able to get through. The second was that staff sometimes used the other elevators and my mom could slip through.

We then moved my mom to a total memory care facility which was much more secure. To get onto her floor, you first had to get an electronic pass to even get onto the lobby elevator. Then, you got off the elevator on her floor and you needed to scan the pass to get onto the wing. This second door which let you on to the wing was on the corner of a box layout, so it was not prominently seen by the residents.

We found this double system to be not only more secure but also found that the staff and guests were all very careful not to let anyone in or out.

Activities.

Ignore the splashy calendar the facility will show you with all the events. What you really need to do is visit several times and see what the residents are really doing and really partake in.

My mom’s first facility was newly opened and when she left there were only 9 patients on the “memory care” floor. The staff was simply incredible taking them from activity to activity, to meals and to their rooms keeping them together for most of the time and really having fun and enriching activities. Not that didn’t mean that if someone just wanted to nap, they weren’t allowed to; they did, sometimes even in one of the more common rooms.

To this day, I thought the place was incredible and couldn’t understand why my mom didn’t seem to like it. My guess is that maybe somebody just rubbed her the wrong way and her mind got set against the place. She had always been like that, yet I’ll never know. She loved the activities and happily participated in them most of the time.

The second facility had activities, but it seemed that my mother really didn’t do much of them at all. In general, regardless of when I visited, she generally was sitting in the big main room with the others watching TV. There were couches and chairs and often the bulk of the residents would be sleeping in the chairs when I went to visit my mom. They had some arts and crafts activities, but when we would go, my mom was sitting and watching more than participating.

My mom moved into the second facility in August of 2019. Covid-19 fully had the place locked up to outsiders by March of 2020. So, for about 7 months she was there pre-Covid.  Despite the lack of her participation in activities, she genuinely seemed to like the place better than the first place that had truly wonderful activities.

Cleanliness.

How clean the common areas and their room is crucial and I must say both places my mom stayed at were incredibly clean. Her bed was always made, the floors clean, her laundry put away, and everything else. As far as the facilities, both were relatively new and were also kept very clean.

Things you might not otherwise think of is whether there are rails in the hallways to aid in walking and whether there is carpeting or a floor that could be slippery when walked on or harder on them if they fall. These things become extra important to those with memory issues as they might not recognize the dangers.

Personal hygiene seemed to be addressed quite differently at the two facilities. The first facility had you fill out a questionnaire of their bathing, dressing, and hygiene preferences and really seemed to follow your instructions. The second place instead had their own bathing schedule and was less likely to ever put makeup on her or really try with her hair, something she had always done. 

The Food.

The very first facility we looked at had two types of food service. Cafeteria-style food that looked to me to be simply terrible and then a menu for those that had no dietary limitations which the staff would carry up and serve the residents in the main cafeteria.

My mom had been living on gourmet healthy meals cooked by her companion and five-star cuisine around the world. I looked at this stuff and quite frankly was really grossed out by it!

My mom was a very healthy individual other than her mind at the time. I had no experience with difficulties the elderly or those with dementia might face. So be prepared if you, like me, are naïve to this fact. Some elderly people have teeth issues, others may have dietary restrictions like no salt. As dementia advances, swallowing can be a problem necessitating soft foods. Pneumonia can even set in through the aspiration of food. It is a sad part of life.

The first place she stayed at served incredible gourmet level meals on their dementia floor. Now indeed, these individuals all appeared to be at an earlier stage, which could be why they were able to do this. It honestly was as if she went out for a fancy lunch or dinner each day. You would get a weekly menu and choose their preferences. If you didn’t, they would choose for you. They even served beer and I believe wine if desired. There was coffee service and even choices of desserts. I must say, the food was fabulous!

The second place where she spent most of her time was cafeteria-style service, but the aides would get it for the residents and serve them a plate. Usually, there were maybe two choices, and I did not think the food was either particularly appetizing, nutritious, or well prepared.  I often saw her basically eat the French fries on her plate and little else. Again, remember, she liked this place better than the first!

When she appeared to be gaining weight, I did speak to a dietitian about my concerns. However, due to Covid-19 and our inability to go into the dining room, I do not know whether any changes were ever made. 

I think the lesson here is that no place will be perfect, and you have to try to figure out what will be most important for your loved one. After years of healthy salads, lean fish and very balanced meals supplemented with fine dining and an occasional pizza slice, my mom was quite happy eating sausage, lots of pasta, French fries and ignoring the veggies on her plate. Was I concerned? Yes. Did I also think that since she really didn’t have any crucial restrictions indicated by her doctor and that in a way, she should be able to eat whatever she pleased? I did. So, I watched as this lifelong healthy eater happily gobbled French fries.

The Administration.

Generally, when you first visit a prospective facility, you will speak to a “sales rep.” At both places, the ladies were two of the loveliest I ever met. In fact, at my mom’s second facility, the beloved activities director was moved into a sales rep position.

The sales rep will take you on a tour of the place and guide you in the enrollment process. At the first place, we liked her so much that when we visited my mom, we visited her office too! Even better, she would give us helpful hints on things as well.

The Head Administrator.

This person has an obviously tough job. At the first facility, she was extremely warm. At my mom’s second facility, the person wasn’t the warmest and I often felt she was “yessing” me to death. I do think she tried her best while answering to the company she worked for, abiding by the laws, and everything else.

Head of Nursing.

The real secret at these facilities are their heads of nursing. They are the person who will address your real concerns about your loved one’s care. Unfortunately, the job is obviously horribly tough, and we found a constant change of staff. The one I adored left because she was simply burnt out. She was so wonderful that my mom used to pop into her office just to hang out with her. The nurse started to call me each time my mom would visit and I would “talk” to my mom. I think the nurse did this, in part, just to keep my mom busy so she could do some work! I will be forever thankful to her as she really did take a special interest in my mom and her care.

Nursing Staff. and Aides 

Do not get attached to any particular nurse or aide as in these facilities it appears to be quite the revolving door. Yes, some do stay, but you never know which ones will. In addition, there didn’t appear to be any regular schedule and very little communication between the nursing staff. I tell the story of my sister being cornered to get my mom more pajamas, when in fact my mom never wore pajamas! Others would tell me she needed more shampoo or whatever when I would have just bought it for her. All in all though, most aides and nurses were lovely.  It takes a special person to go into this area.

Activities Director. 

Do not underestimate this person as they are the one that will determine whether your loved one is sitting around or active in activities. I simply adored the activities director at the first place. She actively had my mother talking with her. At the second place, the director had her hands full once Covid-19 set in, adding Face Times and Video chats to her duties. She was so lovely. Her replacement  was an equally incredible young man, who made extra effort to arrange FaceTime’s for us with my mom.

The simple point here is most people do not think to actively meet and really observe these different professionals. Keep in mind that you are going while they are operating and you‘ll be introduced to dozens of people as you pass by touring the facility. Do one better. Ask to specifically meet, even for a minute, these people.

The Residents Rooms.

Depending on what stage your loved one is at, their room may be totally irrelevant to their happiness. Again, I had fanciful visions of this being my mom’s new “apartment” where she had readily available help, a social club worth of activities, and where we would regularly go out and go shopping, see the city and be out and about.

The first facility had huge, gorgeous rooms with spacious bathrooms and a small dinette. Having crossed the country, I bought my mom all new furniture and decorated it to the nines. We even bought a dinette table and two chairs, cups and silverware, beautiful linens and just about everything you would for a lovely apartment, even a queen-sized bed with a special mechanism so it could lift like a hospital bed.

Most of it was a waste. The cups and silverware were quickly sent home with me as presenting a danger (their recommended list at this place was a one size fit all, which did not have a separate list for the memory unit I later learned). Her floor rug has also been deemed a danger. Her comforter was later deemed too slippery when she started to fall out of her bed. 

When we moved her to the second facility, they had already furnished rooms with a twin bed. The rooms and bathrooms were much smaller. We stored all her new furniture and bought her twin bedding. She never seemed to care a bit about the downgrade.

While the second place’s room had a lovely view of a pond, in general, I do not think it mattered at all to her at that point.

Simply put, if the rooms are clean and functional, that is what is most important. I wouldn’t worry so much about the view, the size, or even the location on the floor.

In general, consider their condition, disregard your preconceived notions and try to figure out what will really matter to your loved one. Realize that individual staff members will change, but most facilities have general standards as well as ways they go about things. Once your loved one is there, if they talk, listen to their complaints and comments. If they can’t, talk to all around you. Remember you’re more likely to get unguarded sentiments from staff rather than administrators.

Realize that price will not necessarily correlate to how nice the facility is or how well cared for your loved one will be. The lovely brand-new facility with its gourmet meals actually cost us less than the second facility and was in the same town. We visited another facility which really looked like an institution, was dirty and sad looking and it cost more than either of them. Also be aware that often you are charged on the level of care your loved one is ascertained to have and that the monthly price might go up as their condition worsens.

Nursing Homes

Generally, I found that nursing homes were really recommended more for dementia patients that also had other conditions or at the very end stages of life, more than they were for those simply with dementia. In fact, as my mother’s condition got severe, the doctors and staff still were not recommending a nursing home for her. It was indicated to me that nursing homes were very institutional and that patients shouldn’t really be sent there unless they really needed the full-time nursing care that they provided. As such, we had no personal experience with nursing homes. 

Yet, like all facilities, the same rules apply. Great recommendations come from physicians, especially the geriatric ones who often have a schedule that has them rotating to several in the area. 

Hospice Care.

I believe the term “hospice” is one that many of us avoid and most of us do not understand. Hospice is not particularly a place, but rather a philosophy of treatment.  I like the description given by The American Cancer Society on their website:

Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness. Hospice care provides compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.

The hospice philosophy accepts death as the final stage of life: it affirms life but does not try to hasten or postpone death. Hospice care treats the person and symptoms of the disease, rather than treating the disease itself. A team of professionals work together to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice care is also family-centered – it includes the patient and the family in making decisions. https://www.cancer.org/treatment/end-of-life-care/hospice-care/what-is-hospice-care.html

Under Medicare, most costs for a person who is on hospice care will be covered. To elect hospice under Medicare, an individual must be entitled to Medicare Part A and be certified as being terminally ill by a physician, and have a prognosis of six months or less if the disease runs its normal course. For dementia and Alzheimer’s patients, this generally means that the patient is at the end stage of the disease, which means they are experiencing the following:

A. Ability to speak limited to approximately a half-dozen intelligible different words or fewer over an average day or during an intensive interview. 

B. Speech ability is limited to the use of a single intelligible word in an average day or during an intensive interview (the person may repeat the word over and over). 

C. Ambulatory ability is lost (cannot walk without personal assistance). 

D. Cannot sit up without assistance. 

E. Loss of ability to smile. 

F. Loss of ability to hold head up independently.

The presence of another disease may also affect their functioning such as COPD, cancer, and the like as well as other secondary conditions. All these factors are taken together, with family input, to decide whether a person’s physician should certify them for hospice.

Hospice is often provided in one’s home or can be at their assisted living facility, a hospital, nursing home or an inpatient hospice center.

Making the decision to put your loved one with dementia on hospice is an extraordinarily difficult one. For me, I would regularly read about the stages of dementia and when it came to reading about the end stages, I would quickly start reading and quickly move to something else because it was so painful to think of my mom being in that condition. I do believe that the personnel at her assisted living facility danced around a bit regarding her worsening condition, which in hindsight, they must have known through their experience was a sign that the end was near for her. Many statistics note that people put off the hospice decision to much later then they should, and I think in our case the sure signs were there perhaps two to three weeks earlier. At that time, I had an “inkling” that things were getting much worse. Yet, I fought them a bit on their decision to put her in a wheelchair, especially after she stood up and walked for us a bit when we visited. Soon thereafter, a special lift to get her in and out of bed needed to be ordered for her. Then, they put her on soft foods, saying they were worried about her choking. It was not until she refused to eat that they called me in to have “the talk.”

That is not to say that when I did speak with their entire team, as well as individually with some of the professionals, that they were not 100% professional, compassionate, and very willing to answer all my questions and not impose their personal views.

I have generally always been of the philosophy that you do all medical things necessary to prolong life, yet over the years I have had situations, such as with elderly dogs, where I realized that you must weigh the pros and cons of medical procedures. Above all, you must take yourself out of the equation and solely think what is best for that person.  I was placed in the unenviable decision of deciding whether my mom should have a feeding tube put in place or whether to place her on hospice care as she had simply stopped eating.

I read numerous articles and spoke to all sorts of medical professionals. What I like to do is read everything from articles on WedMD to articles and studies in published medical journals. In the end, I decided that for her, the feeding tube was not the best choice. My sisters fully supported my decision as did my daughters. Her doctor suggested we wait until he saw her. The next day, my mother’s doctor went to visit her and said she had pneumonia and that she needed to go immediately into the hospital to address it. She stayed there a bit and when she finally went back to the assisted living facility and was put on hospice, she died six days later.

The actual aide that was provided by hospice was incredibly wonderful. She was just so tender, patient, and compassionate when bathing her and dressing her. The nurse they assigned, who we did not particularly like or find to be warm, was nonetheless very competent. The people from hospice also made all sorts of calls to me asking if I needed any support, including a chaplain. All were very nice. The service that was used, which I believe was affiliated with the hospital, also offered all sorts of services after she passed away, none that I participated in.

Hospice is a decision that every family needs to make for itself according to their beliefs, only you know in your heart what is right for your loved one.