ASSISTED LIVING CHOICES

Advice and Insights from Some Who Have Been There

These stories are from a number of years ago but we find them still very relevant today.  

February 2009

Deciding to move a loved one to an assisted living facility is not easy. In fact, it may be as difficult a decision as moving to a nursing home because the older adult will experience loss – the loss of home, of neighbors, of familiar rhythms in day-to-day life. The tips below offer ideas for making this transition easier by including the elder in decision-making, searching for quality care, minimizing loss and identifying positive aspects of this change in the elder’s life. Thanks to these Voices Members for their insights given to a member struggling with this transition for her mother. 

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My mom moved into an Assisted Living from her own home. She was a really good sport about it and found that she actually had more freedom in the placeStateAL because she was able to move around the facility, and enjoy cooking, a manicure, crafts, and other people while at home she had been isolated even though she lived with my brother and his wife. Living in Assisted Living worked very well until her dementia worsened and like too many families we suffered when the facility just could not provide the care that they promised. Fortunately, we were able to find a small loving family care home where she lived the rest of her life.
Here are some things that we found useful:
1 – Mom met with the administrator before moving in and asked questions. Even though she was quite frail, she asked about her religious freedom, her right to handle her own money, her right to stay in her room or leave it if she wanted, etc. I was so proud of her and learned so much from her.
2 – My mom chose her own room from the ones available and chose the color it was painted and the carpeting. She chose a room with a view of the school where my brother was principal and that also looked out at the Gazebo.
3 – My brother (who lived nearby) moved my mom’s things and arranged the room including pictures, etc. so that when she walked in it really did feel like home. We had discussed with her what she wanted to take, etc. My mom actually liked having fewer things because it simplified her life and decisions. She called the room “my safe nest”.
4 – We carefully reviewed the agreements that needed to be signed which did not include an arbitration clause but had some strange charges that we got taken off. It is also important to make sure the facility has fire sprinklers and alarms, and that the facility has regular fire drills.
5 – I visited quarterly and sometimes spent the night with my mom, developing relationships with the staff, doing crafts together, etc. I lauded them when they did things right (i.e., they were excellent at hydration – having “water boys” – students from the University – come by the room in the morning and afternoon offering fresh water in nice decanters and encouraging the residents to drink and checking on what else they needed.) I tried to give the staff insights about my mom that they would not know, like how she loved farming and sewing, etc. so that they would know her as a fuller person.
6 – From the beginning, I made it clear that I would raise any issues and problems with the admin and staff directly rather than make it a public issue. I did make it clear, however, that I knew what quality care looked like and that I expected that for my mom; also that I would not hesitate to report poor care if they did not resolve the problems.
7 – The place where my mom lived had electronic records that were used in house and between the facility and the doctor. I checked these records frequently and found them an excellent source of information. My mom was very medically complex – lupus, heart disease, Meniere’s disease, multiple strokes, Alzheimer’s disease, arthritis, diabetes, etc. I found that the facility periodically identified mistakes that the doctor’s office, pharmacy or facility made in my mom’s many (0ver 25) medications.
8 – I shared information about the Pioneer Movement and culture change with the administrator and gave suggestions on how I observed care could be improved.
9 – The local ombudsman (whom I had helped train years before) was a great allie and checked on my mom periodically.
10 – Several times a year, I left a gift basket for the staff with a note of appreciation. I actually made up three baskets, one for each shift.
11 – We did care planning regularly like we would have in a nursing home.
12 – We encouraged my mom’s friends to visit like they would have in her own apartment.
13 – I made friends with my mom’s tablemates and other friends. As she became frailer, they were so supportive of her and our family – watching out for her and tell us how she was doing.
14 – When my mom became very confused, this facility just could not care for her. After a brief period of time trying to get the problems corrected, we moved my mom and my brother again recreated another simpler safe nest for her in a small family operated home. We were blessed that she received wonderful loving care until the moment that she died.
Alice H. Hedt

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When my brother and I were looking at Assisted Living for my mother she was in a nursing home following a hospitalization. In addition to the advice in other e-mails about what to ask, we asked a lot of safety related questions–such as evacuation plans, availability of AEDs (portable defibrillators) and staff training in CPR. This information is important for residents who are not DNR. Only ONE assisted living building passed this ‘test’. After my mother became a resident, I encouraged the staff to train ALL staff in CPR–not just the medical and dining room people. Last I heard, the building is still doing that.

We asked about HELP pull cords in bathroom, bedroom, living room, etc. We asked about staff turnover rates. We asked about emergency generators for power failures and what was hooked in. We asked about the mix of residents in regards to religion and ethnicity in order to be sure the mixture would be good for my mother. We asked about how the building staff helps a new resident adjust. We asked about pet ownership and whether we could bring our pets to visit. We asked about transportation to medical appointments and nearby shopping. We sampled a meal and asked about accommodations for diabetic, salt-free, etc. diets. We asked about how conflict resolution is handled between resident and resident and resident and staff.

In touring the ‘apartments’, we found they really could look homey because they had kitchens. Another plus to look for on the tours are how long a walk it is to the elevator, dining room, activity areas, etc. Notice, too, how many turns are necessary to go between all these things. I looked at one building that had VERY long halls and several turns to get to activities, meals, main lobby, etc. I had trouble keeping track of where I was, so I could not imagine it being easy for the resident to learn. (Nixed that building.)

We chose a two-bedroom unit for my mother so she would have space for as much memorabilia as possible and would feel like it was home. One turnoff for us was that so many assisted living places barely had room for a resident’s clothing. During the remainder of my mother’s stay in the nursing home, my brother and I moved her furniture, clothing, and as much else as we could. We talked with my mother about what a great place it was and told her she was going to like her new digs. She walked into the apartment and was thrilled to see her familiar belongings and furniture. Then we took her shopping to pick out a smaller dining room table and chairs and curtains and a new bedspread. The building loved how my mother’s apartment looked so much, they used it for a photo shoot for publicity/prospective residents brochures.

I must say, the building did a beautiful job of making sure she met people and sampled activities. It took her two days to really start loving living there!

Just as if my mother was in a nursing home, I visited her several times a week and once a week joined her and her tablemates for dinner.

Several years after my mother died, my significant other needed assisted living. I did some preliminary searches and narrowed it down to 3 or 4 homes that the two of us visited. The very same assisted living building where my mother had lived came up as the first choice by far in spite of the fact that management had changed.
Lorrie Van Akkeren

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Be sure to get a list of the services that are being provided and check to make sure they are provided.

Think about starting a Family Council if there isn’t already one there.

Make several visits to the building and the new room so that she becomes acquainted with the layout and perhaps meets some of the residents before the move.

Have her supervise the packing of her things and decide which go with her and which do not.

It’s best to make the final move as quickly as possible–like in one day– and to get the new living quarters set up to match the old ones as much as possible. 

It’s important for her to be in charge of where things go in the new living space.

Make sure she has some snacks that she likes before you leave her.

As always, when you leave on that first day, if it’s early enough arrange to go back in a few hours to make sure she’s doing OK. She may need additional comfort, additional help, or have questions that were not anticipated. If you can’t get back that day, make it a point to get there fairly early the following day.

Be sure the television and telephone are working properly before you leave.

Make sure she has a copy of menus, eating times, and planned activities and knows where to find them.

Take time to accompany her to some of the social areas or social events in the first couple of days if she agrees. You might also want to have a meal with her at the facility.
Kate Ricks

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Your mom is very brave. My mother-in-law refused to go to the assisted living in her CCRC. We had her here for a while. It wasn’t a good time.

My first thought is that you should read the contract VERY carefully. There are often binding arbitration clauses and such like in it. Cross them out if you find them in the contract and initial the cross out. Make sure you know exactly what services are being provided for the extra money. Vagueness is what facilities use to cover that fact that if Mom needs more than reminding her about her meds, there will be extra charges. Assisted living facilities are supposed to be filling out a disclosure of what they can provide and whether there is a charge. 

In the continuum of services provided by CCRC’s as well as nursing homes and assisted living facilities, there is often a clause that allows the CCRC to refuse to provide care if “the person becomes a danger to himself or others.” It sounds innocuous. Your mother would never do such things. But a person with Alzheimer’s does often do such things as the disease progresses, and you could find yourself having to move your Mom at a time when any changes sets her off.

People with family in CCRC’s may offer other advice.

Have a great moving party!

Clare Whitbeck