93-year-old mom has stopped walking outside and is withdrawing. What should we expect with palliative care?

I am sorry to hear of your mom's recent decline. It's a good idea to evaluate the situation and make plans, so you won't be caught off guard and will be prepared for her care if her needs change.

Did the doctors say why they diagnosed her with Alzheimers as opposed to some other form of cognitive decline, such as Vascular Dementia, which is common when the patient has strokes? I ask, because sometimes the patient has both Alzheimers and Vascular Dementia. It may difficult to predict the rate of decline with each. They may also happen at the same time, which is called Mixed. I'd ask her doctor to give more details, if possible. Then you can look at the Stages of Dementia to get an idea of how things might go. Of course, a general decline might be expected at her age, even without the dementia.  I'd also explore other meds for her anxiety. Sometimes, you have to find one that really works.

Do you and your family have the ability to care for her in your home as she progresses? I would anticipate her becoming much less mobile. I'd explore if bringing outside help into your home would work or if she would need placement in a nursing home or some other long term care facility.

Of course, no one is certain of the rate of progression. She could continue at her current level for some time. No harm in being prepared though.

Do you live in an area where it is very warm outside, starting about 6 weeks ago?

Her diagnosis went from a general "dementia" to "Alzheimers" without any specifics. She has been living in our home for the 27 months. We started the weekly palliative care about 2 months ago.

We live in Kentucky, so it does get warm in the summer. She will venture out onto the porch because she says she likes the warmth. Her lack of mobility is more weakness than the climate.

Our moms sound a lot alike, except my mom was never formally diagnosed with any form of dementia, but she most certainly has something, most likely Vascular Dementia based on her past medical history. I wonder if perhaps your mom had a scare when she was out walking? Or it could just be that she is losing the strength to go for longer outings, the catch to that of course is that the less she does the weaker she becomes. I moved home to help with my mom about 7 years ago, she became completely dependent on me for her ADLs about 4 years ago, and I finally had to place her in a NH this Spring, so it has been a long journey. I encourage you to plan for the long term; explore ways to keep your mom walking and social. Adult day care? Seniors exercise classes?

I agree with Sunny about the meds, tell the doc they aren't working and explore other options. My mom greatly benefited from mirtazapine, although it was prescribed to help her (and I) sleep it also made her more herself and less anxious through the day.

Dementia manifests itself in different ways with different people. My LO, had a rapid decline and began falling a lot. She suffered some fractures and ended up in a wheelchair, not long after her dementia diagnosis. She was able to move her feet pretty well to propel herself in the wheelchair though, so her mobility was greater in the wheelchair than walking. She was able to get around really well in the Memory Care unit. Lately, her ability to use her legs and feet has declined though and I suspect that it will continue.

I'd try to read about dementia and how the loss of mobility is one of the things that happens in the progression. With my LO, she had a huge issue with balance and would just tip over just standing still and even with a walker! That scared her a lot. Plus, they eventually forget how to move the muscles required for movement.

My mother was SUCH an active walker in her younger (60s, 70s, 80s) years. Until she stopped driving last fall, she drove herself to the mall to walk. It became a social group for her. But then she stopped driving.

Because of the way she treated/treats me, I spend as little time with her as possible. I have committed to driver her to and from medical appts. and a 1x/week shopping trip. I have suggested over and over that she call some of her mallwalking friends to come and get her occasionally. But, oh, no...she "can't impose on anyone like that."

So now she (age 91) stays imprisoned in her condo. She double-locks the doors, keeps the blinds mostly closed, and doesn't use her AC (or even her ceiling fans) much (so it's stuffy). She won't even walk down the street with her walker anymore.

So of course she's finding it harder and harder to walk...

Speaking only to the change in her enjoyment of walking: Three issuescould also be the cause: macular degeneration, dysphagia diet, and using a walker.

Was she using a walker during her previous walks? If so, then this could be factored out. If not, it could easily be combined with her macular degeneration to create a higher sense of unsteadiness, loss of sensation of where she's walking, and general anxiety about being outside.

Macular degeneration would obviously affect her vision, perhaps causing anxiety and most likely uncertainty as she walks, even if it's a route she's taken many times before. Fear of getting lost and/or fear of falling could easily be detriments to walking. Rooms have borders which she can determine by feel; outdoor walks usually don't.

I've read and am seeing first hand how a dysphagia diet can discourage someone. It's eating only for the sake of nourishment, not for pleasure. Anticipating a nice meal and enjoying it are, from what I've read and my own experience, factors that are integral to human life. They're part of our daily visual and mental stimiulation.

Think of chocolate and coffee, steak and potatoes, and how much millions enjoy them.

Pureed chocolate just isn't the same, nor is thickened coffee.

So couple those 2 factors and I can easily understand why she's walking less.

Two suggestions:

1. Walk with her, or take her in a wheelchair, or drive to a nice place with enough wildlife activity that she can listen to birds, hear the soft gurgle of a stream or the lap of waves on a beach. Beaches also have their own fragrance, which I find soothing and refreshing.

Find a local garden with a sensory area, filled with fragrant herbs and flowers. Use these factors to rekindle her love of walking, but integrate them into family activities so she's not alone. (But use a wheelchair for her if you have to as walking in a new area could be terrifying.)

Try to switch from visual stimulation to auditory and fragrant stimulation.

2. There are dysphagia molds in which pureed food can be made more attractive. I've seen some in grocery stores, but also found some online at one dysphagia food site. With macular degeneration though, she might not be able to see enough to enjoy a more attractive food presentation.

If so, consider using aromatherapy to make the meal more appealing. Cinnamon is one of my favorites, so are roses. Depending on her level of dysphagia, you might either mix up a bit of ground cinnamon in applesauce, or even just open a small jar of cinnamon and stir it periodically.

Fresh flowers, such as carnations with their lovely fragrance, roses, and other fragrant flowers could be placed on the table, and you could rub the petals occasionally to release more fragrance.

Mint and lemon are also stimulants. In fact, since my father had lemon stims during his first dysphagia episode, I did some research and learned that lemon foods can similarly stimulate the swallowing muscles. So lemon pudding is definitely on the menu for my father. I'm trying to find lemon sherbet, and will thicken it with Thik-it. Fresh lemonade could also work, if thickened.

If you garden and grow mint or lemon balm, rub the leaves as she eats and allow her to inhale the fragrance.

I've also used herbal soaps, again, just scratching them to release the fragrance (but keep them away from her so she doesn't mistake them for food).

I'm sorry that I didn't address palliative care. As it's been explained to us, it needs to be scripted for by a physician; in our situation, we'll be working with one of our specialty physicians who's treated my father for over a decade and knows him well. She's the best one to monitor him through reports of the staff who visit.

Since I am researching and interviewing potential palliative care providers, I've learned that some offer a minimal level of support: phone calls once a month. I'm going with a higher level of support. But this is also determined by the doctor's script, the long term chronic conditions (macular degeneration, Alz).

Have you discussed palliative care with her physician(s) or specialty physicians to learn what they would recommend? I would do this first. I don't think the weekly bathing is really palliative care, rather private duty care. I'm not sure if that would be included, as I was primarily interested in the medical aspect of palliative care. I will be having private duty as well for the non or semi medical aspects.

So learning what each company can provide and what your prescribing doctor feels is necessary is a first step. Then start researching palliative care companies in your area, creating a short life for in person interviews and "assessment" as the companies call them. These are excellent opportunities to get more information on how they work, how they handle staff, what they propose, etc. It can also eliminate the ones that don't meet your standards.

It's my understanding that Medicare has only recently addressed breaking out the palliative portion of care from hospice care, which is a different approach and level of care. The company which I probably will choose is in some type of pilot program; I don't recall the details right now.

Palliative care will still include treatment for various issues, including pneumonia, while hospice would not. That's one of the major differences. I'd have to check my notes but I believe also that fluids and samples can be taken for delivery to a lab affiliated with or retained by a palliative care company, and determination made, e.g., if pneumonia is present. In conjunction with your own doctor(s) or a specialty or home care doctor, antibiotics or other meds could be prescribed to treat the developing illness.

This is opposed to taking the individual to urgent or emergency care. This would really help us as winter approaches.

But you do need to contact and discuss what each palliative care company will offer. One thing I feel is mandatory is that the staff be consistent; I've recently encountered home care companies and a palliative care company that assign staff the night before a visit. One even told me who comes the next day just depends on who's available.

To me this represents a fundamental and critical lack of understanding that older people, and people with decreased vision and/or dementia, ABSOLUTELY need consistence in visitors. Different people in a revolving door environment can, in my opinion, only confuse someone even more. (I began to get confused on who was doing what before I fired the revolving door home health care company!)