Anybody have a good idea for communication with your elders? My parents both have mild-moderate dementia and are independent living at a CCRC. E-mail used to work but doesn’t anymore. Information from calls are promptly forgotten. We have been using a wipe board in a prominent location that does work, it just limits the information I can write, and if it gets too busy, it is confusing. Recently, I went on an extended trip out of the country. I wrote on the board when I was leaving, when I would get back, and my daughter’s contact information if they needed anything but I didn’t put down my location or details about visiting my son.
I see them every week or 2 (weekly in the last month) and have been talking about my trip to Australia each visit for about 3 months. But, of course, they have no recollection of such conversations and got anxious as they didn’t know where I was or why I went. They said they tried calling my daughter but she got no messages or missed calls on her phone. I can only put so much information on the board as too much information is as bad as no information. Anybody have an idea that works better?
My dad (an engineer) at least, can think, but he can only remember what is happening at the moment. For example, it is 90 plus degrees here and obviously hot with complaints of the heat when walking to dinner. At dinner, when discussing weather of the southern hemisphere he was confused: “When it is hot here it is cold there (showing he can think) but it is not hot here (he forgot the heat we were just walking in).”
My mother used a wall calendar. Important dates, appts, trips, etc can be written in so the elderly parent can refer to them. My mother would put a line through each day so she knew what the date was.
Is there a way your daughter or other trusted person could reach out to them daily by phone in your absence? In my experience, once this ship has sailed, you have to use what you know to change strategies. Could a friendly visitor come by regularly? Would there be independent living staff willing to check in at significant times? One can hire such people if others aren’t nearby. Then you could give this person detailed info that they could share if asked. You are on the right track to simplify what they have to process.
Often, the progression of daily confusion, accompanied by increasing anxiety, generates a move to another care level. Sadly, the ability to rely on a white board dissipates for many over time. Best with this; I navigate it, too.
@busyparent: different techniques may work best for each elder, with the stair layout and elder’s specific limitations determining factors. Googling yields some suggestions, but I wouldn’t want to assume they were the best for every individual. Many become too frail to do stairs at some point, necessitating a riding chair, elevator option or one floor living.
Has the elder had an at home physical therapy assessment? Not sure how it works with Medicare, but PTs can be invaluable in looking at challenges in the home and determining how to best work around them with various equipment, re-arrangement of layout and caregiver support.
They will assess elder’s capacity to manage stairs and daily routines, provide a simple exercise program if elder is capable, etc. Such programs may help increase strength relevant to the tasks at hand, if such potential exists. Elders with dementia or vision/depth perception struggles may be unable to compensate for them enough to do stairs. Dr’s usually write orders for PT; a family’s request and input about concerns at home could move the process along. (We sought this PT expertise for one of our kids to better manage the aftermath of a major surgery. It was invaluable.)
Hope that you can get some input that will make this go smoothly and safely. There may be liability associated with some of these situations. Is the caregiver certified, with training how to provide ambulation assistance, transfer patient and facilitate safe bathing/etc? They may have ideas and should also be there for initial PT consult.
Thank you Travelnut. She has dementia, but still wants to go upstairs to sleep. She has 24/7 caregivers who are wonderful, but not professionally trained. I am afraid if she fell on the stairs, she would knock the caregiver down as well. She did have someone come to the house and suggest another bannister so she can grab both at the same time and that has helped. I think maybe one of those stair chairs might be in order.
It’s very hard to get all the sibs on board. Some are firmly in denial and claim the doc agrees with their assessment that everything is fine and perfect. It just confuses our aging folks when they have kids who agree that they are still fine to do everything including driving at night in unfamiliar areas and roads. . Tough enough with the folks without having to deal with stubborn sibs!
Phew, thankfully 2 other sibs have chimed in that we need to intervene to keep things safe, to help overrule the rose-colored glasses “everything is fine.” We keep having this awkward dance between what interventions are needed woman’s which ones can wait awhile.
HImom- the most difficult thing is when sibs are not on board. What they don’t know, is that with the short amount of tie the doc spends with your parents, he/she has no way of knowing what is going on.
Went driving with my dad today, scary experience. I am now at the shop getting the car fixed. Fortunately everyone is OK and car not badly damaged. The Prius is now mine!
My dad AND my sib are BOTH in denial together. It took the combined efforts of me and 2 sisters to allow me to prevent dad from driving my unfamiliar vehicle on unfamiliar roads in the dark to go to a place he has only been once/year, at NIGHT! It took hours before brother would finally reluctantly drive dad and deign to allow me to drive MY vehicle to leave for them to put “prizes” in.
In the best of circumstances, dad is iffy driver. He’s now on prednisone and also has a PICC IV line in and is on a bunch of Rx he’s reacting to!
I shudder at the reminder of riding with a driver that shouldn’t be behind the wheel. Scariest thing ever!
I am back from visiting Mom, had another care conference. Is it bad (rhetorical question!) to be really sorry she is off of hospice? I am sad in two ways, one that her body is strong while her mind is pretty gone, and the other is that now the AL place will send her off to the hospital to be rassled around when she should not be. I am captured by thinking over and over about changing her POSLT. She did it when she was still fairly together. She picked the “medium” route, DNR, no feeding tube, but yes to IV’s antibiotics, and other invasive care. As her health care director and her guardian, I can change it to “comfort measures only”, then she probably can stay out of the hospital. I’d also have to convince my brother, who, when he talked to her about the POSLT did not want her to DNR. She doesn’t want to be sitting there in diapers no matter what, I know that. But still, signing something to change what she wanted at the time is a very scary proposition.
She has fought back from a ton of things that would have done a less strong person in. Last month she survived a fall where she had 5 staples in her head and a concussion. Now they watch her like hawks for falling so she isn’t falling AND she is getting more interaction… thus the more care took her out of hospice care.
And just ranting, medicare will pay hospice to give her showers, but will not pay the AL aids to give her showers. So another $500 a month for her to pay. And she has to pay for her own depends when hospice was supplying them. It is those little things that drive me nuts. grrrrrr
Can I ask about incontinence? My mil started losing control last month at the same time she became severely dehydrated. After a week in the hospital and three weeks in rehab, she is no better. Her mind seems normal ( for 91 ) and is well oriented. But when I ask her about it, I get vague answers. She does admit she will intentionally go in the depends since it’s there. And she waves off help from her son and daughter to take her to the bathroom. She isn’t changing depends often enough either, resulting in soiled bed and couch. Twice. Could it be she doesn’t care about being clean anymore? She needs a caregiver daily to get washed, and I’m hoping she will stay proactive on changing the depends. Is this likely to get better. Or worse?
Yes, for reasons unknown to me, one sib seems unable an unwilling to grasp that having an unsafe driver on the road risks death to others, not merely having the vehicle damaged. That sib keeps insisting the doc is FINE with dad driving, tho all the rest of us have spoken to the same MD and heard him voice his reservations. Somehow, sib and dad are living on planet denial together. Scary indeed!
@juniebug , likely to get worse. the muscles need lots of work to keep up when we age. Do your Kegels! But once someone is just going to go in the depends, it is unlikely to reverse.
Mom sometimes cannot recognize her body needs which is why she needs to wear them. She also leaks almost constantly. But she wants to go to the bathroom when she can get someone to help her. Just sad.
For women who are ‘young enough’ (and I don’t know what age that means) - if you have urinary leakage problems (and I did - I would in my late 40’s go to the rest room and then have to have a pad to go jog due to urinary leakage) it can get surgically solved by a skilled GYN. One year, after I was ‘out of the woods’ from breast cancer and met the insurance deductibles for the year, had an outpatient surgical correction, a bladder sling type of procedure. Mine used a modified procedure and also used some mesh (be warned to go to someone highly recommended) and did a great job; he also later did my laparoscopic assisted vaginal hysterectomy/oopherectomy when something was showing up on my R ovary and my uterus was prolapsing.
Insurance required a bladder test for me to have the ‘sling’ surgery - which I ‘failed’ both parts of the test. I also had to meet the insurance criteria for the H/O (I was glad to get that risk, the cancer monkey off my back – I have too many friends that have had uterine or ovarian cancer after breast cancer).
Think ahead - at some older age they (insurance or doctor) may say you are ‘too old’ for the bladder sling procedure…
That’s what I was afraid of. Could be psychological or physical, I suppose. I also had a uterine prolapse hysterectomy with a bladder sling in my 40s. I sure hope it helps.
@juniebug-Virtually every woman in my parent’s AL relied on Depends. Agree that the control is unlikely to return. The management of this can get more challenging as frailty increases, causing people to “take shortcuts” with hygiene. Cognitive decline is also a variable. Skin is vulnerable to abrasion or infections and it can also increase risk of UTIs. This issue can drive the bus towards more assistance.
What caused her dehydration? Is she unable to keep track of fluid and food intake as well? Many 91 year olds need help. Bathroom assistance from your kids can be hard to accept dignity. After 3 weeks with rehab level of care and limited improvement, one short daily clean up may not be enough. Sorry for what you are all navigating. These basics are often powerful indicators of the best way forward.