My Mom With Bird
My mom is 91 years old and has vascular dementia. She has slowly declined over the last nine years. Through my research, I can assume she is in one of the last two stages of dementia (there are seven). My mom has been in skilled nursing care for the last 9½ months and needs 100% assistance. The last thing that she could do on her own was feed herself.
Now she has dramatically declined in the last month and even needs assistance with eating. She is still a good eater, but does not have the cognition to eat on her own. It is too much work for her. Her short-term memory seems like it has decreased to about one-second.
Antipsychotic medications have reduced the amount and the intensity of her delusions, anxiety, crying and irritability. There have been medications added, increased and decreased in the last four months. It has been a balancing act to try to improve the quality of her emotions and cognition without having her become lethargic.
Now my mom’s memory loss has affected her ability to walk. At the last care conference meeting, we discussed the quality of her life and whether it is a good idea to try to make someone walk or not. It takes constant encouragement to get her walking and she keeps trying to sit down. I have advocated for the caregivers to keep trying to walk her daily. They never make her, but lots of encouragement can produce a walk to breakfast or lunch. By dinnertime, my mom’s Sundowners Syndrome with anxiety and crying make it impossible to walk her.
My mother seems confused and miserable when she walks and just wants to sit down. I want to try to decide in the next week, if I should just let advocacy regarding walking stop all together. In my opinion walking seems so important because it gets her circulation going and her memory seems to clear up. When the walking officially stops, the memory will for sure get worse. Maybe I just need to accept my mom is in the final stage of dementia and have her enjoy what she can…like playing with the new bird at the community.
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Diane Twohy Masson is the author of “Senior Housing Marketing – How to Increase Your Occupancy and Stay Full,” available at Amazon.com with a 5-star rating. The book is required reading at George Mason University as a part of its marketing curriculum. Within this book, the author developed a sales & marketing method with 12 keys to help senior living providers increase their occupancy. Masson developed this expertise as a marketing consultant, sought-after blogger for senior housing and a regional marketing director of continuing care retirement communities in several markets. She has also been a corporate director of sales and a mystery shopper for independent living, assisted living, memory care and skilled care nursing communities in multiple states. Currently, Masson is setting move-in records as the regional marketing director of two debt-free Continuing Care Retirement Communities in Southern California – Freedom Village in Lake Forest and The Village in Hemet, California. Interestingly, this career started when she was looking for a place for her own mom and helped her loved one transition through three levels of care.
Working on a dementia ward, I witnessed the decline of ambulatory skills with nearly every resident. While efforts varied from family to family, there was not, I believe, a right or wrong answer. Personally, as someone who cared deeply for each patient, it was difficult watching the struggle, anxiety, and often, outright fear exhibited when trying to assist someone with walking. It’s important to note that each patient’s willingness, cognitive abilities, and strength levels should be considered. Exercise classes, where individuals are encouraged to lift an arm, a leg, are a viable option. Music therapy is often included during classes, providing a fun activity while reducing stress. Whichever way you decide to go Diane, any option chosen from love is the right one.
Hi Diane,
It is very very hard to let our elder take the lead and balance our desire for them with their desire. If you’re mom didn’t have so many challenges, I’d say, continue to encourage her to walk, however, from your description your mom seems to be saying “I’m done with that (walking)”. Overall, she may be saying I’m getting done period. That’s probably not easy for you to digest. My suggestion is to spend as much quality time with her as you can, following her lead as to what gives her life right now. It may be something as simple as watching a bird or holding hands and napping. When elders reach the time of life where your mom is, things get so much more simple. We need to simplify ourselves so that we can walk this part of the journey with them and help them feel loved and safe. You have a lovely perspective and have thought about this alot…..use your heart to guide you now.
All the best to both of you.
Assisted Living Professional Network
There might be a possibility that she can get the circulation through an exercise class the staff have the ability to work one on one with the resident’s where they can still get exercise through movements of lower and upper extremities. We use to call the staff member Restorative Aide where I worked which is what I was at one time. The body in movement was good for body and soul–resident’s felt they were accomplishing something and felt good or as in dementia felt at peace and busy. Maybe that may work for your mom. Resident’s seemed to perk up after the music and movements.
By Lori D. Jarvis
Thanks Lori! I appreciate any advice.
Boomers: Aging Beats The Alternative
My approach would be to let her do what she wants or doesn’t want to do. Why cause her distress? Let her be in peace. What do you think?
By Lorie Eber
Boomers: Aging Beats The Alternative
I agree with Lorie, let her be in peace. “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.” May God grant you serenity as well.
By Kathy Sporre, CSA
It’s hard to resist the temptation to “know what’s good for” people we love, but it is kinder to let them direct their own lives to the extent they can.
By Lorie Eber
Lori, she has no short-term memory left, plus she is not at peace. The mental anguish of Sundowners is getting harder. She cannot direct her own life any longer. That is what makes this so hard. She is still a good eater if someone assists her and her smile can light up the world.
Kathy, I love the serenity prayer, I needed to hear that today.
I agree with this comment. Even when dementia is not involved it seems to be natural to make decisions for parents. I recently have had to step back and remember my mom is in control of her life. I remind myself daily that they are her decisions to make, I try to keep her safe and I enjoy the time we have together.
Elder Care Professionals
You might look into a found-in-nature compound called
vinpocetine to reduce vascular dementia without bringing
on lethargy. It works by improving blood circulation in the
brain. One of my clients with vascular dementia was much
improved by a vinpocetine regimen (plus other brain nutrients).
Of course there may be a hidden physical problem making
walking very difficult for your mom.
By Walter Zintz
Thanks Walter, I have never heard of this. I will look it up and talk to her psychiatrist. The tricky part is the dementia has progressed to Sundowners and delusions.
Linked In Executives in Long Term Care
Keep visiting her, keep her spirits up, work with the therapy folks, restorative, and therapeutic activities. Enjoy her time with you as much as possible.
By Chet Malanowski Ph.D.,LNHA
Thanks Chet! I will!
Linked In Alzheimer s Association
I read through the details of your article Diane. I’m an occupational therapist and also a daughter to my mother with dementia (she passed away in 2011). There’s a subtle difference between encouraging your mom to walk and really promoting it. I completely agree that walking and moving is very healthy, but you are dealing with a person experiencing a significant, global neurological decline including ambulation. There is also the possibility that having your mom walk when neurologically she isn’t coordinated (you said 1 second attention span) enough to do so could lead to a fall, even if she’s supervised, with ugly consequences. On a good day or good moment, do you best to get her upright and walking but accept that sitting down after 2-5 steps may be the best thing.
By Elaine C. Pereira, MA OTR/L CDP CDC
Thank you Elaine, your information was helpful. In the last three months, she has gone from walking 2 blocks to walking 20 feet. I will accept 2-5 steps and keep her safe.
Alzheimer s Association
You might also try having her do some sitting exercises that can help. My grandmother who is 98 with Alzheimer’s has not been able to walk unsupervised for years and we are getting very close to that needing to stop completely. She has very little balance and what I see happening now is that she can not remember how to make her legs function correctly with out reminders like, “Walk like a cowboy!” We say this when she is walking on her own feet. It is important for them to move however, so we do sitting exercises to help.
By Sandra Millard
Thanks Sandra, but my mom has always hated exercise. She just flat out won’t do it, even before the dementia. Her only exercise is walking, so with that gone there is no exercise left for her.
Long-term Care Industry Professionals Group
You could also do some chair exercises to keep your Mom from seizing or freezing. It is important to keep a senior as active as they can be and without causing the individual pain or frustration. Always good to involve a physiotherapist when looking at dong exercises.
By Gail Tomaselli
Long-term Care Industry Professionals Group
In my opinion the walking is good, but if she doesn’t want, can’t walk and walking make her miserable, how you said in the article, may be is a good idea to consult with a doctor and a physical therapist to see their opinion. The acceptance that she is in her last stage is not easy for you. It’s not easy for anybody to face the facts. I lost my mother and my sister last year and the acceptance of them going was not easy.
By Doina Farcas, BSW, President
Doina, your understanding made me cry. Thank you for reaching out to me. The physical therapist and doctor are both involved, in fact an entire team of 8 was at the last care conference. I kept asking if the meds were stopping the walking or it was truly decline. No one knows. I just don’t want to give up on her too soon.
Gail, my mother has always hated exercise even before the dementia. So me giving up on her walking is very final.
Linked In The Elder Care Network
Hi Diane, encouraging and assisting with walking is one of the best things to do for your mom and for care staff. A really cute picture of your mom with the bird. As noted in your comment she does feel better, and other reasons for walking is to keep lungs clear, avoid skin breakdown, circulation, contractions, plus it will continue to help with dysphagia once she gets to that stage. Even if they are just standing her and walking her a few feet at a time, 4-5 times per day, is good. Another thing to check for is any new medical conditions, or infections. I really love that you have been advocating to the home to continue walking her. As most Nursing homes, tend to wheelchair bound their patients. Have you thought about placing her in a 6-bed care home? one more thing that typically happens in any care environment is failure to thrive, if no one is talking with her and engaging with her throughout the day, she her abilities decline too.
By Denise Walker
Denise, I love your comments thank you for reaching out to me. The physical therapist and doctor are both involved, in fact an entire team of 8 was at the last care conference. I kept asking if the meds were stopping the walking or it was truly decline. No one knows. I just don’t want to give up on her too soon. They just did a series of blood tests to see if there was anything else causing the lack of walking.
PS I loved the picture with my mom and the bird. It was a happy moment.
Hi Diane,
There is so much to say on this topic related to the ethics of aging and the right to self-determination, but I’ll just stick to what I know. I am an OT and specialize in dementia care. Vascular dementia differs from Alzheimer’s in that the trajectory isn’t quite as predictable. The brain damage in vascular dementia is spottier than Alzheimer’s, and therefore more variable. Much of the resistance to walking seen in dementia lies in the approaches used by caregiver. The patient must be allowed to pull to stand in order for the natural motor patterns to kick in- if someone tries to lift or pull the person, there is a natural tendency to pull back or not bear weight through the legs. If you put her up to a sink or railing and give her the opportunity to pull up, she might actually enjoy that. In my opinion, standing is just as valuable as walking in the later stages, and the risk of falling is far less.
Walking is very self-limiting activity in the presence of pain. If her knees or hips hurt, she will sit. If they feel pretty good, she will walk. Of course, this does depend on the extent of the damage to the sensorimotor cortex, but it’s a good rule of thumb for most people who are unable to communicate.
My advice, don’t beat yourself up about the walking, but encourage opportunities to pull to stand. She will get many of the same benefits of weight bearing, skin protections, air exchange… without the trauma of being walked. And if standing becomes easier and better tolerated over time, you can progress to some marching in place to music and taking a few steps. Hope this helps, Sue
Sue… a good thorough response to Diane’s question. I am also an OT, have read the research on exercise in the elderly, know first hand (my Dad) how the progression of dementia can make walking very difficult for all involved. Safety is priority of course but opportunities for standing for a few minutes can be found throughout the day. Standing at: the sink, the nurses station to smell the flowers, the door or window to look out and see the squirrels, the table to transfer to a regular chair for lunch. My Dad would always stand if someone asked him to dance… or sway as it was …but to us, we were dancing.
Wow, tough decision. The term “use it or lose” is so very true for the elderly. With dementia pt’s even tougher because their ability to learn and understand the consequences of what they do or don’t do is gone. One of your mom issues may be that it hurts to walk. If she has arthritis in her hips or knees, she may not be able to tell anyone but sitting gives her the relief she needs. The other issue may be simply that her leg muscles are weakend to the point where she has no stamina and “just gets tired of walking”. At 91 her time is limited, whether it’s 10 days or 10 years. I would say encourage exercise (not necessarily walking but wheel chair exercises or “dancing” will also work) and help her to do those things she finds pleasurable. Be with her where she is, where ever that is cognitively. Enjoy your mom.
Dianne, I agree movement is very important; standing and being in the standing position stretches the spine, relieves the back. Since your mother was walking so well just 3 months ago – do you think she may have pain that is also effecting her movement and walking? Will she dance with you a little, again getting her into a standing position allowing some weight bearing and movement. Walking is such a rote skill- keeping that as long as possible is great; but enjoying her right now is probably just as important. This must be very hard for you; my thoughts are with you.
Hi Diane,
My hope in helping your mom to continue to walk, continue to encourage your mom to do as much as she can inform the staff to give her as much as support that she needs. Have staff participate in her walks with her not just make her walk. If she feels like sitting allow her to sit. Don’t give up on her and don’t take it personal. She is not in her right state of mind!
I am a certified nurses assistant and from my experience in working at a senior assisted living residence. I got the chance to care for people with dementia. You r so right the level of dementia varies and it also varies from person to person too. I have to say that each individual responds differently it seems as if they go into some kind of depression mode and don’t want to try anything at times. it varies because at other times the same person will walk will laugh will eat on their own and even participate in different activities.
as the dementia progresses the same person will not want to walk to eat on their own and even participate in any activities, they lose tract of time and always tend to talk about the past events that happened in their lives.
some of them don’t sleep well they get up at night and want to wonder around. They just want someone to sit down with them and hold their hand or sit close by. One resident always wanted to have a small light snack and a drink of water when she woke up and wandered around.
We as caregivers should encourage each person to do as much as they can to their ability. We should participate in walking with them if they want to sit let them sit. it takes allot of patience compassion understanding and love to assist someone with dementia. Encouragement love compassion and support for those with dementia goes a long way. It is very tiresome so allot of caring support is key!
They even tend to forget how to Love back and they are not doing it intentionally.