How to know when mom needs 24/7 care?

Lindsay22

Hello, I am new to the boards.  My mom is 75 and late stage 4/early 5 AD according to her last assessment in September. She is still living in a senior apartment building (not assisted living) with caregivers and me coming in.  She cannot live in my home for various reasons.  She has been declining rapidly in the last few months and I wonder how to know when the right time is to move her to a facility.  I know there is no clear answer to this but I don't want her to have to move from her routine and especially her beloved cat until it is totally necessary.  Some things that make me think it is time:

Bathroom accidents

Refuses to bathe (although she did let me was her hair a couple of weeks ago)

When I am there she wants me to leave (I think I am a disruption to her "routine")

Sleep problems (calling in the night, saying she needs to get to bed at 2pm etc.) 

She hasn't wandered and still walks around the corner to the store a couple of times a week but I don't know for how much longer it is reasonable to have her alone on some days. 

Any advice or thoughts appreciated. 

Jo C.

Hello Lindsay and welcome.  It does sound as though your mother's abilty to process things accurately, to be able to utilize adequate judgment and reasoning has become recognizabley compromised.  Her abilty to care for herself as her bathroom accidents as well as calling to go to bed at 2:00 pm and her calls during the night may well be indicating.

That she is still going around the corner to shop despite her compromised judgment and reasoning is a bit concerning as sad as that sounds.

If we live with our Loved One (LO ) on 24 hour days for a week, we would see many more areas of deficiency in the ability to manage than we see in the the short times we currently are with them.  This is something many Members here have discussed after experiencing just such dynamics. 

It may be a positive to contact the Alzheimer's Assn. 24 Hour Helpline at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers that specialize in dementia and family dynamics.  You could discuss your mother's situation with detailed particulars and obtain help in assessing where your mother's needs seem to be and the options to meet them.

The road to success for a person with dementia is to be in a living environment with daily routine and structure; this is not what appears to presently exist.  Having her cat with her is understandable; but it cannot be the driving force regarding safety and appropriatenesss of care.  Some care settings actually permit some pets to come along with the incoming resident, but certainly not all of them. Others cannot take their pet into the care setting and a family member will take the pet for them but are able to bring them to their LO for visits.

Has your mother had a checkup recently?   If not, it may be helpful for her to have one with labs done to rule out any health condition which may be contributing to her changes in behavior and function; that can happen.  And when there are changes from the usual, it is always good to have a urinalysis done, always with a culture and sensitivity to rule out a "silent" urinary tract infection; those UTIs often have no symptoms, but can cause dramatic changes in behaviors and even function and cognition.

If you are identifying unsafe and less than reasonable behaviors and you are asking these questions, it is time to have a bit of medical detective work done by her physician and to already be looking to format a "Plan B," that is; what would the next step of care be for your mother, and to screen those care settings until you find one or more that feel acceptable; you will then have that Plan B in mind and will not be running hither and thither under stressful time constraints if a need abruptly arises.

 Do let us know how you are and how things are going, we will be thinking of you and I send best wishes for a very good outcome,

J.
 

MN Chickadee

The things you describe sound more like she is sliding into stage 6 if not already there. These changes can happen suddenly. At the point where she is so compromised she cannot see the need to bathe and confuses day for night, I would not let her go out alone. She must be quite impaired then. The confusion about where to go when out and about can come out of nowhere, and it can end in tragedy. Even if nothing awful happened, it would be incredibly scary for her and you.  We had a couple warning shots off the bow. First my a neighbor reported that they saw my mother walking and she seemed lost. Then a few weeks later she lost the car. Couldn't find her way home, parked the car somewhere in the neighborhood, and eventually walked home and we had to drive around looking for the car. What could have happened if this had happened in our bitter cold winter, or if she never did find her way home? This was the end of her driving and going out alone. I personally would not have your LO alone. Many PWD resist help and changes, you will probably have to use therapeutic fibs and find workarounds. The sleep and personal care issues with accidents and bathing are only going to get worse. I would start the legwork of change now. Research and choose a couple facilities, do the financial planning with an estate attorney if it hasn't bee done to plan for her long term care, get on waitlists. It sounds like it is time. As another poster here often says, by the time someone comes to this forum asking how you know if it is time the ship has usually sailed and it is beyond time. It's a hard pill to swallow and difficult to make decisions as the family and POA, but to me it sounds like she either needs to move to a new arrangement or have help coming into the house 24/7.

jfkoc

It's good to measure by the worst not what she can still do. Look especially at safety. Will she know how to call 911 and when? Is she cooking and leaving the oven or top on? Bathroom accidents make slippery floors and that means falls.

It is time to have Plan B in place.

Quilting brings calm

I consider my LO to be sliding into stage 5 after 20 months at a stage 4( and probably more that we weren’t aware of).  My parents have  been living in assisted living for 19 of those months.  The first month was spent in rehab recovering  from urosepsis. 

My Mom is not having bathroom accidents, is still showering ( with Dad there because she fell once).  She is anxious  in the apartment at the ASL by herself when Dad is running errands. Her thought process is slow and she can be very repetitive in questions and topics.  A 10 minute call can discuss the same topic 8-10 times. She  is  increasingly  confused as the day goes on.  She gave up driving about two years ago. And didn’t drive much for a few years prior to that,  she is 83

In the ASL, they get meals and snacks.  Laundry and housekeeping service, medication management, activities, transport to local doctors, 24/7 staff that they can call for anything, including getting something off a shelf.  All of these above  things are necessary for my Mom. Shower supervision is also provided.   they don’t get skilled nursing and bathroom accidents might be frowned upon if it was ongoing. 

They were allowed to keep their dog as long as they could take care of it.  

 I think the only reason your Mom has been able to stay where she is until now is the caregivers. However I don’t think she should be in an unstaffed building.  I also think you may be coming to the end of the stage at which she could go into assisted living instead of memory care. 

Mlewis501

I think if you are thinking about it... it is probably time.  Get a plan in place.

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Stuck in the middle

My wife couldn't live alone, but she is quite a bit more functional than what you describe.  I would place your mother if she were mine.  She is in danger, and so is her cat.

Lindsay22

Thanks for the input.  I know that her cat isn't a reason for her to stay, I just know being separated from him will upset her and that he brings her comfort so I am dreading it.  We are on several waitlists for placements and I am taking her to the doctor today for the official referral to MC.

harshedbuzz

Lindsay-

Incontinence, refusal to bathe and sleep disturbances are straight out of the Stage Six Playbook. 

Stages of Dementia Dr. Tam Cummings

My dad never wandered. He wasn't ever the sort to try to cook something on the stove or microwave. But he wasn't safe left alone by this stage. It can be hard when you are so close to a situation to get a sense of how impaired they can be. My mom had an appointment on a day that she was having a new HVAC system installed. She asked me to come over to be available in the event dad wanted to circumvent the install in some way; he was having serious spatial processing difficulties and was constantly trying to do things like turn their 5 x10' utility closet into a Jack & Jill suite or park both cars in the one car garage. 

While I was visiting with dad, the techs triggered the smoke detector soldering something. They yelled down to explain, but dad didn't hear that. After about 30 seconds, he asked me what that noise was. I said smoke detector. He sat for another 30 seconds and then got up to look for my mother because there was a fire. He was unable to identify what the smoke detector was, forgot the appropriate response to a fire- dial 911 and get out- and that my mom wasn't home. We never left him alone again. 

HB

King Boo

You are beyond there.   Self care is gone down the tubes, safety awareness is not there at the stage you describe.  She cannot come and go at will, no time awareness, etc.  

Move now before the crisis comes.  You have limited choices placing during a crisis.

Emily 123

You never know, you might find a place that will let her bring her cat. They can be such a support. Can’t hurt to ask. They may be willing to if there’s a pet deposit.  Something that helped us was to put a small, second litter pan out of the way for a few weeks until the cat adjusted to her new accomadations.

Iris L.

It is possible that you are overestimating her attachment to the cat.  She may love that cat because it is there right now.  Are you sure the cat is being cared for properly,  BTW? But if the cat were gone, she may forget all about ever having had a cat.  That's the way memory loss works in PWDs.  Out of sight, out of mind.  I have memory loss myself.  

Iris L.

MN Chickadee

I did tour a MC that allowed pets though it is not where we placed. It was not a high acuity place, the people were middle stages of dementia and moved to a wing with more care if they progressed where I am sure pets were not permitted. They are expected to care for the pet themselves, though the staff did help. They didn't want to advertise the staff will help, because obviously this could be a slippery slope to putting way too much on staff, but you could tell they kept an eye on things with the pets. By the time a PWD is unable to care for the pet they will soon forget the pet if removed. My mother took to a robo-cat to my utter surprise. Though attaching to one may seem nonsensical to us, the PWD often doesn't see the things that make it robotic and just likes to cuddle and hear it purr. Joy For All is the brand and it was worth every penny for us. One of the staff members got a  kitten (a real one, lol) she brought into work a lot and the kitten grew up with car rides and being out in the world so she likes it and comes often still to see the residents. Perhaps that is something you could do after your mom moves.