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Passage of Time
JAFdaughter
Posted: Monday, May 13, 2019 12:27 PM
Joined: 4/16/2019
Posts: 13


First time poster here. My mom likely has early stages of Alzheimers. Doctor is just ruling out stroke or any other cause of dementia but they are unlikely to find anything given her symptoms. Her mother had Alzheimers. Her MMSE test score was 17/30 at last check and it's gone down by 3 points for each of her last 3 appointments. She lives on her own currently.  My brother and I share POA and I currently handle all finances. Her short term memory is very bad and she no longer shops for herself or really leaves the house hardly at all although at this point she has her license. The doctor didn't want to blindside her at the last appointment but warned her it will happen soon (only reason he didn't take her license is we told him she doesn't driver anywhere and she's on zero meds. Directions are not a problem with her at the moment. She doesn't get disoriented.

Anyways, one of our biggest challenges is that she has a very hard time judging how much time has passed and tends to remember how she did thing a year or two before when she wasn't suffering with memory loss. For example, she still thinks that she goes to the grocery store on a certain day and that she always has a shower and does her hair on Saturday. So it's very difficult convincing her she needs to have a shower because in her mind she just did it a couple days ago.  Mom is a great cook but doesn't really do much cooking at all. In fact she eats a lot of cereal for supper but in her mind she's only doing that every once in a while. She thinks that something that happened 6 months ago just happened 2 weeks ago. So the challenge for us as her kids of course is that you can never believe her and it's this constant challenge of convincing her that it's time for her to do something. We have someone coming in once a week to help out with light housekeeping but she doesn't think she needs help because she feels she is cleaning. And for 81 of her 83 years she was a very capable, independent widow who could pretty much do anything she set her mind too! She drove 6 hours alone from Ottawa through Toronto to her 80th birthday party at my house to give you an idea.  It's just been so difficult getting her help when she doesn't think she needs it and making her realize that she isn't doing the things she thinks she is!I know you aren't supposed to argue with dementia patients and a lot of stuff we just let go but there are times where we simply need her to do something.

We have Meals on Wheels starting this week just 3 times a week but she's already telling us she won't want to keep that up and that she doesn't like the meals. When you are a great cook I guess it doesn't quite meet her standards lol!

I live 6 hours away but come visit every 2 months or more and my brother lives in her town and she has a very helpful neighbour that is more like family. We all work very well together in helping mom.

 

 


dayn2nite2
Posted: Monday, May 13, 2019 12:59 PM
Joined: 6/20/2016
Posts: 1926


Have you been able to assess how she's keeping her hygiene up at all?  It's very likely with the situation you describe that she hasn't bathed in a very long time (thinking she just did it last night) and it's also very possible she is wearing the same clothing daily.

If you ask her she will say she is bathing but at this stage it's very common for them to not be bathing at all.

Frankly, I think you'll need to start preparing to move her closer to you because living alone won't be an option much longer, even with support.  She thinks nothing is wrong.

She will "fire" meals on wheels and the housekeeping help eventually and if I had to guess I would say within 6 months something is going to show you that she really cannot live by herself anymore.


King Boo
Posted: Monday, May 13, 2019 1:25 PM
Joined: 1/9/2012
Posts: 3014


Unless your brother is there twice a day, her care needs are rapidly escalating, and she will be at risk..She sounds much further along that early stages - look at the moderate stages of Fisher's Stages.

There will be no 'convincing her' of anything, let that one go.  It is about getting the care needed done - how that shakes down varies by individual.  But it does generally involve taking the reins and stopping to expect the PWD to agree, not be blindsided, and be rational.

She will go down the tubes from self neglect if someone is not there to feed and moniter her meals and medication, because she is not a reliable source of information anymore.  Trust me on this one - 4 weeks after a visit, I found a family member skeletal and near death.  Yet all was fine on the phone - and according to the well intentioned but untrained neighbor.

Rejecting the meals has to do with ansoagnosia, which is due to brain damage from dementia.

Get a care plan in place involving aides during the day, and then research adult day care and facility options near the POA who will do the bulk of the visiting and advocating.  Take the keys, the car is 'broken', you have a friend who needs a job and is helping you out temporarily, OK?  Get the hang of creative fiblets which get the job done.


dayn2nite2
Posted: Monday, May 13, 2019 2:12 PM
Joined: 6/20/2016
Posts: 1926


Wanted to add that I agree with King Boo that your mother is not at all in "early" stage, she is much further along and at least moderate heading into severe.
bela
Posted: Monday, May 13, 2019 2:34 PM
Joined: 12/15/2011
Posts: 4105


I agree with king boo and others in that she is less capable than t appears

One wrong decision happens in a split second without warning. Stove for example. Remove the car and keys to your brothers house.  At minimum, brother needs to be checking in person daily

Doordash and other companies delver from any restaurant you choose but I’m sure the cost is 

A bit high.


Jo C.
Posted: Monday, May 13, 2019 2:59 PM
Joined: 12/9/2011
Posts: 9848


Hello JAFdaughter; I have not met you before, so want to extend a warm welcome to you.  It can be seen that your mother has two loving children who care and who are trying to do their best under difficult circumstances and challenges.

From what you have written, it appears that your mother is actually much farther along in her disease process than family may actually realize; that is not unusual, it happens to many of us until we gain more knowledge.

Her brain has sustained damage not only to the ability to retain memory; but her capability to utilize judgment, logic and reasoning are quite damaged. She is not able to control those very necessary components; that is out of everyone's hands secondary to the damage within the brain.  Processing information and tasks by now are in all probability also compromised.  She may develop rigid false beliefs about things for what she has or has not done; these are technically called, "delusions."  It would be questionable whether or not she is fully safe living alone any longer.  Is she competent to know what to do in an emergency, a fire, a break-in, a fall, if contacted by scammers, etc.  Her nutrition and hygiene is significantly affected.

Driving is another issue.  Sadly, she should no longer be driving at this point.  Can you be absolutely certain that at some point she will not take the keys and attempt to drive somewhere.   Her ability to think and act fast and using judgment for this is gravely compromised as well as processing and attention problems.  Should she get in an accident, that would be dreadful especially if someone was injured or killed.  It is also a fact that today, people are fast to bring lawsuits; in a lawsuit medical records are subpoenaed; there would be the diagnois of dementia with testing that shows a huge drop in her capabilities; that would not bode well and frankly, she could lose her assets or worse in such a legal action.  But of course the main issue is one of her safety as well as the safety of others both adults and children.  Many accidents occur within  one to five miles from home; or within five minutes of one's home.  Pretty startling statistics.  Best to remove the car keys or disable the car. 

I would like to suggest that you may find value in contacting the Alzheimer's Assn. Helpline at (800) 272-3900.  If you call, please ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics; they are very supportive, have much information and can often help us with our problem solving.

At the top of the page is a link to, "Solutions."  There is some good information there for how to deal with some of the more common challenges.

There is a condition called, "anosognosia."  This is where a person has no belief that they have a problem; it just no longer computes.  Anosognosia is not the same as denial; it is interesting to look it up on Google and do some reading.

At this point, where the judgment, logic, reasoning and ability for her to conduct her nutrition and hygiene, etc. are compromised, these are all signals that she has a far more problematic condition than is understood at this time and she is already experiencing delusional thinking in regard to what she has and has not done.  Even if there are Meals on Wheels, this does not guarantee that she will have good nutrition for three meals a day if she does not actually eat them.

From what has been written, it appears it may really is time to have a discussion with brother regarding Mom having care on a 24/7 basis whether that would be in her home with a care aide, or in one of your homes, or even in an Assisted Living setting that caters to persons with dementia.

One of the most read resource books on dementia, is; "The 36 Hour Day."  There is also a good writing by a dementia specialist, Jennifer Ghent-Fuller, "Understanding the Dementia Experience," it can be found online at:

http://www.smashwords.com/books/view/210580

The one big asset your mother has, are her two children who care and who are good advocates for her; that is awesome and will keep you in good stead on her behalf and is also good in anticipating and preventing problems that could be serious.

Do let us know how you are and how things are going, we will be thinking of you,  Warm thoughts are being sent your way from one daughter to another,

J.


JAFdaughter
Posted: Tuesday, May 14, 2019 9:59 AM
Joined: 4/16/2019
Posts: 13


Thanks everyone for your honest replies. Just to give you more of an idea of where we're at, she's been to the doctor quite regularly and in April went to a memory specialist clinic that included a social worker, geriatric doctor and nurse practitioner. My brother and I participated in this appointment and gave them all the relevant info. From there she was referred for an ECG and will be having a brain scan in June to rule out any other cause of dementia. Both her regular doctor and the specialist said that she has moved from mild cognitive disorder to early stages of Alzheimers. Once the test results come back they will make a more definitive diagnosis.  When they asked if that surprised her she said that yes it did. In the care ride home I asked if she had any questions and she said no and has not acknowledged that she was just told that she likely has Alzheimers. I'm assuming that I shouldn't bring it up? I don't want to remind her and cause her extra stress and concern. But at the same time it explains why were are doing what we are doing and it's tempting to remind her when we explain why she has to have help!

She is not on any medication which is very helpful so there's no concern there at this point. Also, her next door neighbour is like family. Their daughter calls her Gramma and they've lived there for 30 years so they can let themselves into the house and between them and my brother someone is looking in on her quite often.

She is not allowed to fire anyone or cancel any appointment. All services and doctors have notes that nothing gets cancelled except by my brother and I. She hasn't had any angry outbursts and there haven't been a lot of personality changes. She is quite stable in her routine at home with turning things on and off and last time I was there I took something out of the oven, sat down and right away she said, "Did you turn off the oven?". I have stayed with her for days at time over the past numbers of months. She just had a home assessment last week and a physiotherapist is coming next week. So we are definitely in process and not trying to do this on our own. Some things cognitively she's still quite good. I realize this will change but we carefully observe her.

We may be able to get a PSW to come in and just be there when she showers. She's not resistant to the idea of showering, it's just that she's not realizing when she last showered. Last time I was there I insisted she shower and the reason I gave her was so that I can help curl her hair. She reminded me that in the olden days they were lucky to get a bath once a week and that she can't wait until I'm 82 to see how much energy I have! I had to laugh at that statement. The one things that works with her is when the lady that did the assessment told her that her job was to help seniors stay in their home so that's probably the only reason why she agreed to Meals on Wheels 3 times a week. Of course she forgot and wouldn't answer the door so they called her and then she did. We bought a deck box that if she doesn't answer they will put the meal in there and her neighbour will bring it in. The person who comes once a week to do light housekeeping let's us know if she needs anything or if she has any concerns. She knows mom really well so she can tell if something is not quite right.

Interestingly, nobody in this journey so far has said anything about getting her into assisted living or memory care. Maybe they are just waiting for the evaluation to be complete. We did realize that when we did the indepth interview that there are a number of things that she is not struggling with yet but that only made us realize how much worse things will get. We have tried to encourage her to let us know what her wishes are so that if something would happen that we would know where she'd like to be but she won't even discuss it. This is not a change however, she's always said she would never even want to live in an apartment where everyone knows your business. I would like to at least get her name on a waiting list because I know it can take a long time.

We at least feel like we're making progress compared to where we were a few months ago. The ball is rolling and we don't feel so along and overwhelmed now that different agencies are involved. I will say thank goodness we redid her power of attorney a couple of years ago!! Doctors will speak to us and I can take care of her finances and pay for services  etc. Our hands would be tied without that! Again thanks for your support. I'm sure I will continue to learn and take advantage of your experiences!

 

 

 


JAFdaughter
Posted: Tuesday, May 14, 2019 10:23 AM
Joined: 4/16/2019
Posts: 13


Just one quick note about her driving. The doctor at the memory clinic basically warned her that she wasn't going to take her license that day but it could be the next appointment. She explained to my mom that she has a legal obligation to do that. She also gave us some information regarding people that could drive mom places. I thought that was very compassionate. Even though mom doesn't really drive anywhere I think this will be the most difficult adjustment for her when she realizes that she couldn't even if she wanted to but we're happy the doctor will help us out with this. We watch the odometer to see if she's gone anywhere. She's only been around the block to get the mail at the box. We expect at the next appointment that she will lose her license. My brother wouldn't hesitate to take her keys if all of a sudden she decided to drive a lot more. So far she's been great with direction. When I drive her places even though I know where to go I will ask her and she has no problem at all. Again, I know this will change so we are preparing ourselves and trying to prepare her as well. That's the hard part.
basilia
Posted: Thursday, May 23, 2019 4:02 PM
Joined: 5/23/2019
Posts: 99


Greetings my dear

My name is Basilia Jackson a lady from U.S, i saw your profile and become interested in knowing you please contact

 me in my email address as a friend

     basiliajackson028@gmail.com


 
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