Looking for Home

What makes a home? I have been thinking about this recently especially in relation to my "research" on future possibilities for Gregory. I have visited several Memory Care Facilities so I can get an idea of what is out there. I think that Gregory is far from needing to be placed in one but it is always good to be prepared.

As long as I can physically take care of him, he will stay at home with me. As far as the emotional ride and how it affects me, that is up to me to keep in check. Also there are many options available to us before placement like home health care, a live in companion, visiting nurses, etc.

After visiting Arden Manor in Northbrook and Sunrise Manor in Wilmette it has taken a while for me to be able to put to words the image in my mind which I took away from the visits. I am sure this time lag is due to the emotional content of my processing.

Both places were clean and orderly. Neither smelled like "old people" or urine as my boyhood memory served from when I used to visit my Grandma Lindenbaum at her "old people's home." I remember my mother feeling guilty at putting Grandma in the home but mom could no longer provide for her mother's needs and it was probably a good decision. While my decision will be a hard one if I have to make it, I will not feel guilty.

In some ways, as I walked the halls of the memory care facilities, I was shocked that I was thinking in terms of Gregory. In terms of my parents, OK, makes sense. But in terms of my boyfriend, my lover, my life companion, my most important other person in the world, my peer ... FREAKY!

Luckily mom and dad were able to "find their way out" without having to go to a "home." Gregory's dad avoided the "home" and Helen did need an assisted living environment but she was alert and active and involved enough in life that the facility she was at was really more like a smaller apartment with a restaurant down the hall and help available as needed.

Both Arden and Sunrise were nicely furnished with little private areas and nooks, protected gardens and walking paths, TV's, restaurant type dining rooms, porches, sun rooms, activity rooms, and even barber shops.

Arden was set up like four neighborhoods surrounding the public spaces with each one decorated in a different theme and different color for easy recognition by the residents.

Sunrise was more "institutional" with the more alert, active people having their rooms and public spaces on the first floor and the more disabled people living on the second floor. Why in facilities of this type do the more disabled people end up being higher in the building?

Arden and Sunrise are specifically for memory care (nicely euphemistic) so some of the props placed around are stuffed animals, play areas, cribs & baby dolls, children's toys and puzzles. While seeing these things was mildly disconcerting. 

These types of items do go along with the research into what people with dementia need as they regress to child like behaviors or earlier parenting skills for their own children or realistic delusions.

Sunrise has a resident cat which is a nice touch. 

In both places, all exit doors are secured and need a code to be opened. In the event of emergency, the panic bar sounds an alarm and opens after 15 seconds, the idea being that staff can attend to the emergency (if there is one) but people could escape in case of fire within 15 seconds which wouldn't be too long a wait. 

Arden has extensive gardens all around the building and Sunrise has fewer. But all of the gardens are open to residents, secure areas, monitored every 30 minutes, and locked at night or in bad weather.

Meals are served with a choice from two or three entrees, help with eating is provided as necessary, snacks are always available including freshly baked cookies (I had one,) fruit, juices, coffee, etc. Often specific items can be requested like a peanut butter and jelly sandwich or butterscotch pudding.

Resident schedules are respected so the can get up early or sleep in. They can get dressed when ready and their breakfast is held until then. Lunch and dinner is served at the same time but if the resident isn't hungry it can be covered and refrigerated.

All resident rooms in both places are checked and each resident spotted where ever they are every hour during the day. At night rooms are checked every two hours. If necessary they are reminded every hour, "Do you need to use the bathroom?" 

Both places have daily activities which consist of exercise, arts & crafts, discussion groups (should be interesting to witness,) movies, TV, music hours, guest performances, and field trips.

A relaxed attitude towards the usual outward demonstration of dementias was comforting. When asked if people steal from each other the response was, "Oh yes, sometimes. But we know who does the stealing and we periodically check their room and return the stolen items." 

What if a meal left for someone in the refrigerator is eaten by another resident? "Oh we will just make a new one. Apparently the interloper was hungry." 

What if a person gets hostile or violent? "We try to find out what is troubling the person. Their acting out is usually part of a lack of communication or understanding and we can handle that. In extreme cases we ask the doctor what he might suggest, but that rarely happens."

Chatting with the intake person, it seems that dealing with dementia patients is so easy. Maybe it is for them because the interactions are not loaded as they are with loved ones who are witnessing the decline. Also it is what they are paid to do and they get to go home at the end of shift. For us caregivers it is a 24/7 ordeal.

The same care givers work with the same residents all of the time. Each resident has a few workers if only to cover the daily shifts and the workers days off etc but the caregivers and the residents get to know each other really well and the specific needs and schedules etc work well.

Both facilities work with their residents through death including hospice help when that time comes. If a person is in great need of medical attention then the person has to go to a different kind of care center, which makes sense. But most of their residents who die of the normal process of dementia die out of the home. Sad but also reassuring.

Arden has a fixed fee that only goes up based on cost of living, not a resident's decline. 

Sunrise has a room fee which includes cleaning, meals, and general care but as the needs increase each one has a fee attached. For example if a person needs periodic reminding about bath rooming there is a fee which further increases if the person needs "Pampers," or to be cleaned and changed, etc. Twice a week showers are included but if a person needs to shower more often there is a fee. Medication administration has a fee. 

Both places would be acceptable to me from my surface investigation. Arden seems to be the better, more active, more opportunities of the two. But Arden is a 80 minute drive round trip. Sunrise is just in the suburb next to Evanston, 30 minutes round trip. To be able to visit with Gregory often, especially as I get older, the long drive would be prohibitive.

One deal breaker is the other residents themselves. They are old. Median age is 80 and up. Gregory is 65. Of those residents who are still alert, their alertness is an old age alertness, somewhat cloudy and slow. Gregory is young and vibrant by comparison. 

The final deal breaker is the cost. All memory care facilities of this type are private pay. Medicare and Medicaid do not pay anything towards this type of care. They kick in only when the person is in such medical need that they are in a nursing type center. Would you believe approximately $6,000/month. Ouch!

I think what I was feeling most, however, in seeing these places as future homes for Gregory is that based on both quotes below, for the Alzheimer's resident they are only houses, not homes. It takes a mind and a memory and an active interaction with one's life and with other people to make it a home. 

That is what I was feeling strongly and it made me very sad. Both were lovely houses but home was nowhere in sight. Life was not being lived, only supported and made safe which may be all you can do for someone with advanced Alzheimer's. While it is said that interactions with others is important, I did not see any residents talking to or visiting with another. Hopefully the residents have loving family that visit often.

For Gregory our home is vibrant and his limited abilities do not get too much in the way of his feelings of having a good quality of life.  His life is safe and predictable. His routines are meaningful and his days full. We interact with each other often, enjoy our friends, go out to eat, and attend plays, musicals, operas, and other events. We even (although I do all of the work) entertain some 50+ people at July 4th birthday parties, Christmas parties,  BBQs, etc.

Many other options, cheaper ones, would be to continue having companions spend some time with Gregory and giving me time for errands and personal space. When the time comes; home health care, live in help, and/or visiting nurses should provide the needed services. As long as Gregory continues to be aware of himself and his environment, home matters and I will continue to provide that for him. Why? Because I love him.

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A house is not a home unless it contains food and fire for the mind as well as the body. Benjamin Franklin


Never make your home in a place. Make a home for yourself inside your own head. You'll find what you need to furnish it - memory, friends you can trust, love of learning and other such things. That way it will go with you where ever you journey. Tad Williams.