Please add all of you can think off to this list - Thanks

Michael Ellenbogen

I decide to a podcast for caregivers next year with a motivational speaker I have now known for over 10 years. I believe many of you can be helped if you would just learn a few things. He is not as familiar as I am with this disease. So, I am asking you all to add all of the issues you have to deal with your loved ones. Nothing is off the table. And if you can add the frequency of how often you must deal with it. For example, if they are always yelling is it almost very minute or a few times a week for 10 minutes. Thanks and please feel free to vent all you want here because that will help me figure out the best approach. And then again, I may find out I am wrong on these issues.

ladyzetta

The guilt you feel when you know you're not giving them all the care they need. Giving them all you can but it does not seem to be enough. Thanks

SusanB-dil

Hi Michael - i see this a lot on the forums, and we deal every day - getting her to take her meds!!  Various ways work for different folks. We wing-it every day and do what we can.

Bathing and tooth-brushing isn't quite as bad an issue (yet), but it is 'there'.

Lsjogren56

Here are a couple of big ones for me:

 advocating for mom with the MC staff to be sure they are following the personal care plan they AGREED to without offending them and making things worse.

Dealing with the loss of my mother as I knew her and still providing good care for who she is now.

Resentment of siblings that just drop in every few months and want to see her when I deal with the day to day. (even though I intentionally moved her near me because I knew this would be the case).

Lsjogren56

Repetitive compulsive behaviors and whether the meds she is given make it better or worse;

inappropriate sexual behaviors with another MC resident from my Baptist raised and very dignified mother. This went on for a month until new medication seemed to stop it - but then it caused the compulsive walking referenced above. Now off the meds and fearful the previous behavior will resume.

UnusedScreenName

"Just leave me alone!" when I'm trying to help him do something he asked for help with or is obviously having difficulty doing.

Rambling, time-consuming, vague (bordering on incoherent, because of his word-finding problem) monologues on how he and I have different approaches to doing things when he is deviating from an established routine that works (e.g. for getting into bed and making sure he is wearing his absorbent underwear) to a process that will result in my having to clean up a mess in the morning, when I'm tired and just want to go to bed myself.

Getting him to leave his hearing aids in until EVERYTHING that needs to be done to get ready for bed is done.  He sometimes argues with me over this.  Conversely (but less of a problem), getting him to put his hearing aids in in the morning, before trying to ask me something.  It's amazing how much of a difference it makes to the tenor of a conversation and my mood when I don't have to YELL at a man who doesn't understand half of what I say anyway, even when he can hear me.

The length of time that I can be out of his sight without him panicking in fear that something has happened to me is getting shorter.  He climbs up the stairs to look for me if he is up before I am or if I go upstairs to take a nap, or if I go to the bathroom immediately after coming home from doing errands.  I was out in the yard one time and he went next door to ask for help finding me, and the short-term renter was about to call the police until I came around to the front to see what was going on.  I can't leave him in the car for more than about 10 minutes before he gets out to follow me into whatever store (or the post office) I have gone into.  He used to be able to sit for 30-45 minutes if I left the radio on for him, and I used to be able to leave him alone in the house while I ran out to do an errand for up to an hour or more.

Rebeccah

UnusedScreenName

He doesn't watch TV much any more (he has mostly forgotten how to use the remote control). and instead spends much of the day silently watching ME.  Either hiding just outside the door to the computer room, or he comes in and sits down, but then fidgets, flicks his fingernails, makes noises with his mouth, grunts and sighs.  I'm not the best social companion much of the time, and I often have to be able to concentrate on what I'm doing on the computer.  Then, besides feeling irritated, I get to feel guilty for not interacting with him or keeping him entertained.

The one good thing is he has a very short memory for feeling slighted.

Rebeccah

Iris L.

I wish professionals would understand and explain about anosognosia and how it is NOT denial.  I get the impression that family members waste a lot of time, waiting for their LO to one day come to them and say, "I need help."  This won't happen.  

The family needs to become proactively educated to that they can anticipate the many common challenges they will face.

Also, families need to be aware that many professionals are less than knowledgeable about PWDs.  They need quickly to seek the Alzheimer's Association and all of its resources,  along with whatever competent local resources that are available to them.  This is a marathon not a sprint.  They need to be prepared!

Iris

Arrowhead

My wife’s worse symptom to date was her obsession with returning to her childhood home. She believed that her parents were still alive and still living there. She would try to walk there several times a day every single day. This was not the typical form of wandering. She did not wander aimlessly. She knew where she was, where she wanted to go, and how to get there. She had an established route that she would take and it was the correct way to go. I finally solved the problem by locking the gates to our yard. 

Now she exhibits an unusual form of shadowing. Instead of following me she often walks in front of me, trying to anticipate where I’m going and often turning around to make sure I’m behind her. She does this intermittently and not constantly. 

Instead of what they call “sundowning” she exhibits what I call “sun-uping”. Her symptoms are usually worse in the first couple of hours after she gets out of bed. 

I think that the different ways in which different people are affected by this disease would also be a good issue to address.

LovingAwareness

Not being able to make my own schedule and get things done when I thought I would be able to - having almost no control over my time. I can think I'm going to catch up on work or return a phone call while he's napping, and I count on it, only to be interrupted when he comes downstairs again 20 minutes after I took him up for his nap - typically saying something like he thought he had to get up because we have to leave for the Christmas party (the one that doesn't happen for three weeks but I made the mistake of mentioning this morning...) Happens multiple times per week. Many times I'll go a whole week without having a shower myself (lucky I work from home, right?) because the window when I thought I was going to sneak in a shower doesn't work out. You just can't count on ever having any time for anything.

Conversely, during the golden time when he IS sleeping, it is hard to get much done then either, because anything that involves making any noise at all will wake him up- even walking by outside his bedroom, I have to be careful of squeaky floorboards waking him up and ruining my brief respite. 

So, it is virtually impossible to get a window of time to get anything done that takes more than 10 or 15 minutes. 

You can't tell him, "can you give me 10 minutes to finish this thing I'm in the middle of?" and have him wait, like a normal person would. He has to be continuously fussed over, kept company, talked to. He has no concept that other people have needs and activities of their own that do not have to do with him. 

ninalu

Hi Michael,

As the only daughter of my mom with Alzheimer's, I wish I had:

- Known how to recognize the early behaviors that would help caregivers / loved ones advocate for the PWD earlier in the process. With my mother, I interpreted some of her early behaviors as antagonistic and that made me turn away from her, rather than towards her and get more involved in her life. I regret that now. Things progressed quite a ways before I realized I had to step in. Any awareness and education will be helpful. 

- Known how to remain positive and positively-oriented with a PWD; how to be with our loved one's strengths rather than their losses. Or maybe better said, how to see and be with both more empathically.

- A better understanding of the types of companion and supportive care options that are available to PWD all along the journey. 

- A guide to various leisure activities that can be enjoyed together - for families, for partners, for friends. Often as a caregiver I've been so exhausted physically and emotionally that I haven't been able to THINK of a fun activity / project that mom and I could do together - something that would help us both ENJOY life more. A reference list of ideas would be so useful, especially if it were somehow paired with a stages / progression. Various members here have posted these kinds of references at different times and they've been so useful to me.  

mommyandme (m&m)

Michael, I just don’t understand these negative comments:

 “I believe many of you can be helped if you would just learn a few things. “

The learning curve is real, doesn’t mean caregivers are dumb.  Ugh!

Communication is a big issue for me.  The “word salad” or whatever.  She won’t hear me, sometimes stubbornly on purpose,  other times because she’s got no clue or understanding.  I’ve learned a lot so far and only feel frustrated occasionally now, thank goodness.  I do have tools now that I didn’t have to start with for sure. 

The second guessing myself… her care… everything.  Constantly thinking of my situation and if I’m doing enough, what else should I do, even when I’ve got respite time.  

She is able to do some walking, some standing.  I need her to continue in helping me move her, transfer her etc… she goes dead weight and my back can’t deal with it forever.  This is part of the communication issue too.  

Thank you for your efforts and input Michael, it is appreciated. 

abc123

Americans need to know that Dementia is an epidemic. They need to know that there are several types of dementia, Alzheimer's, Frontotemporal, Vascular, Mixed, Korsakoff. There are more. I totally agree with Iris about ANOSOGNSIA. People need to be educated about dementia and made aware that it could happen to them or a LO at any time. People need to know that loss of memory is only a small part of the dementia journey, We need to put the TRUTH in peoples faces. Someone mentioned recently about the commercials on TV showing a sweet elderly, well dressed, well groomed elderly lady. That's B__LL SH_T. Hollywood makes movies that shock me because of the violence, filthy language, sex scenes and total disregard for human life and decency BUT they haven't made a movie about what really happens to our loved ones and us. What are they waiting for? When I go to my doctor or take my dad to his neurologist there are brochures about eating healthy, exercise, blood pressure, allergies, BUT nothing about dementia. Several women that I have talked to about dementia in the last year have no idea what dementia is really about. They had only heard about Alz. and thought it involved only memory loss. They were shocked when I told them about early onset. They had no knowledge of what it's really like, no clue what really happens to our LO's and us. Everybody knows about Covid BUT nobody knows about dementia unless\until it slaps them in the face. This has turned into a rant and I apologize for that, but I am very angry and sad. Michael, I sincerely appreciate you and the work that you do. The same respect and admiration to Iris.

BethMimi

Mom is incontinent and won't bathe.  Today was bad.  I can't get her clean where she is (I'll put it delicately) messy.  I'm at my wits end.  I'm taking her to the doctor soon and ask about a sedative possibly.  Other than that it's kicking and screaming and claws digging into the door frames.  I'm afraid in the struggle she will get accidenally hurt.  She fights that bad.

Iris L.

How expensive dementia is and that most costs are not covered by ordinary medical insurance.  Dementia care might impoverish some families!  Get legal and financial advice early!

Iris

SusanB-dil

Agreeing with what has already been mentioned. Some good points made.  And yes, I agree with Iris on maybe further educating some folks in the health-care field on anosognosia.  And there is no reason to not treat someone with dignity.  The lack of compassion and dignity that abounds makes me mad.  We have had some great health-care folks, but even in general, i have really wanted to tell someone off!

also - driving... both with having to remove someone from behind-the-wheel - but also providing alternate transportation to our LOs. 

The roller coaster of some days being better than others. the frustration of the not-so-good days!  Getting yelled at when you are trying to help, but not even knowing what you've done 'wrong'.

Cobalt

What you think of as "hallucinations" and "delusions" may be different from what a person with dementia exhibits.  For my son, a constant delusion is that he is "soaking wet" from his adult diaper or because he says he is "sweating bullets".  And each is an emergency in his mind.  We cannot get through to him that he is not wet at all, and he is not sweating.

Yelling daily for him may add up to about 2 hours in a whole day!  Some episodes are 10-15 minutes at a time, others may be fairly constant for an hour. It's hard to deal with and gives me a headache.

Constant demands to go back to bed.  We know if he spends too much time in bed, his brain is not "exercising" and can get worse with dementia or get closer to being bed bound from not using his brain.  Most of the time it comes with sundowning about 5 pm to 6 pm.  But sometimes it starts in about 2 pm.

Hearing yelling from my son that his "brain is broken" and recently, "My AI is broken".  It's heartbreaking he is so aware that pieces of his brain are just breaking down.  If only there was a way to comfort him!  Sadly, we are getting less opportunities to distract him when he is on a rant.

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bozowing

Constant struggle caregivers go through to feel appreciated.  It's not abnormal for immediate family to bail on the caregiver and LO.  Constantly questioning why am I going through this can't no one see what is happening?  Feeling of being abandoned.