I could use your advice

Zaellan

I'm the primary caregiver for my mom with Parkinson/dementia, my sister helps out when necessary but I'm responsible for day to day and giving medications.  I've never dealt with someone with dementia before, I have lots of questions.  Here goes!

1. Recently my mom was prescribed Remeron (for appetite stimulant).  She has started to see things that aren't there, it just happens to coincide with the prescribing of the drug.  Can this cause the dementia to get worse?  Or is the problem that the drug was prescribed, thereby breaking the routine.  Speaking of routine, she was also prescribed physical therapy, they come a couple of times during the week. Can these new people cause the dementia to get worse? They are breaking her routine.  Any suggestions on how to deal with this?  We are working with her doctor, she wants to see her through a week of the new prescription before we make any changes.   She seemed to be fine before all this happened.  It will be a long week.

2. When she people that aren't there, what do I do?  Do I say they aren't there? Or do I say something else.  

3. My mom has been moved to my place.  She wants me to sit with her most of the day (I can't, I work from home).  Any suggestions on what I can do to keep her occupied?

4. She had a complete break the other day.  She had the delusion that I was holding her captive.  How do I deal with her at times like this?  I know I handled it bad when it happened.  I tried to keep calm,  told I wasn't but she kept arguing with me.   I called her neurolgist and the nurse said quote "I know this isn't what you want to hear but sometimes this what happens with people with dementia".  That response isn't going to help.

5. Tried talking to my sister but as long as I keep her here, she is happy.  She takes care of taking her to doctor appointments.  I'm here 24/7, no breaks except when she takes her to dr appointments. When it comes time to move my mom to a facility, she told me that it will be my decision (I'm hoping she wasn't serious about that).  I'm so tired.  She never thinks about that. Or if she does it doesn't matter to her. 

Sorry this is so long but I don't really have anyone to talk to about this.  Look forward to hearing your suggestions.

Quilting brings calm

Call the doctor and ask for an order for Urinalysis to rule out a urinary tract infection.  The new behaviors sound like one. 

Did your sister mean you had to pick the facility or just that it was up to you to say ‘it’s time mom go to a facility? She may feel it’s time now but ceding the decision to you as the orimary  caregiver. Who decided  to move her into your home?  You or your sister? 

Zaellan

Its odd you ask about a urinary tract infection, she did mention that she had to get up a lot of times during the evening.  Does that affect the mental state?

My sister meant it was up to me when it is time for her to go to another place.  That is a lot of pressure.

It was my sister's decison to move her in..she said it would be best for her to move in with me..this was right before we went into covid lockdown.  We moved her out of a independent living facility, there was covid running rapid through the facility.  She was able to live independently at that time.

towhee

Hello, Zaellan, welcome to the forum.

Yes, a UTI can cause mental confusion. 

Usually, when there is a sudden change in our Loved Ones, mental or physical, we try to go thru a checklist of things that can cause said changes before we say it is just dementia progression.  You have already touched on several items on the list. A doctor visit and bloodwork is often advised.

1-Common medical problems that can cause increased confusion etc.

Dehydration---Constipation----infection, UTI, unnoticed pressure sore (check feet, bony areas, skin folds)---unexpressed pain, low vitamins, low salt, low sugar etc. I would absolutely check these out, especially since she has been losing weight.

2-Medication side effects or interactions-- you can use drugs.com or another website for this.

Remeron can cause confusion, that is fairly common, actual delusions are rare but have happened. Constipation is also a fairly common side effect, and sometimes constipation happens when a medication acts like a diuretic.

3-Change in environment--yes, this can cause problems, but just having PT there for a couple of hours a week does not seem like enough by itself. Your mother has been in your home for some time, yes?

How to respond to hallucinations or delusions- Telling her they do not exist rarely helps, try not to argue. Try to validate the emotion behind the delusion. Board members recommend a short article available for free online called "Understanding the Dementia Experience". You can call the Alzheimers Assoc. Helpline at any time if you need to talk to someone.

If your sister is the one with your mothers POA, tell her you need help. You need someone to stay with your mother so you can get a break. A vaccinated companion for her for a few hours a week. Now. Unfortunately we are going back into a covid surge, but you do need to go ahead and look at MCs and nursing homes so you will know what is available. Parkinsons can require quite a lot of care in the later stages, as can dementia.

Best Wishes

b

Jo C.

Hello Zaellan and welcome.   I can see you are facing some significant challenges and are working hard as not only a caring adult child, but as an excellent advocate seeking knowledge; that is excellent and will take you far.  All of us, when first facing being carers for our Loved Ones, (LOs), find ourselves on the learning curve ladder. It takes time to gain the knowledge, to process the dynamics, gain knowledge and put it together.

Does your mother have both a Primary Care MD as well as a  dementia specialist?  That would be very important.   It is good to have the prmary MD care for all things NOT dementia.  Our primary MDs are awesome at so much, but they are not specialists in the complexity and even multiple subtleties dementia brings with it.   A good Neurologist is great at diagnosing what specific type of dementia is present and establishing an appropriate plan of care.  That is crucial as one type of dementia is different from another and medications are often different.  If misdiagnosed, incorrect meds may be prescribed which can make things even worse.  Having a dementia specialist as a key person on the healthcare team is a priority.

In Parkinson's Disease, the most common dementia is, Lewy Bodies Dementia.   Has this been your mother's diagnosis?  If so, delusions and hallucinations are very much part of that disease and the treatment and meds are very specific and there are meds that are not usually prescribed for LBD due to negative effects that may be caused.

Here is a link to the LBD Assn should this be your mother's diagnosis or if you wish to find out a bit more:

https://www.lbda.org/?gclid=EAIaIQobChMIsu2s6NfE8gIV8BitBh2OJABwEAAYAiAAEgIkpPD_BwE

Yes, UTIs can indeed effect our LOs behaviors.  Many of these UTIs in our LOs are "silent" UTIs. That is; they may have no physical symptoms whatsoever, but there will be a significant change in behaviors; always good to rule that out.  If symptomatic, that will be telling and of course need to be checked.  NOTE:  Do not use the at home test strip for detecting UTIs. They are notorious for false results either direction.  Have the doctor order a UA with culture and sensitivity; that is important.

The Alzheimer's Assn. has a 24 Hour Helpline available 365 days a year.  It can be reached 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 who specialize in dementia and family dynamics.  They are very supportive, have much information and can often assist us with our problem solving.

The multiple changes you mother has experienced on top of having dementia can definitely be contributing to her fear.  In fact, our LOs can develop "delirium"  when in a hospital, when moved to a new facility, and when having a change or multiple changes with environment. This takes some special steps to assist and a bit of time until the delirum has worked its way through which can take weeks or sometimes longer.

https://myhealth.alberta.ca/Alberta/Pages/how-can-I-help-the-person-with-delirium.aspx

Your mother's need for you to be close is in all probability due to fear which is very real and overwhelming to her.  She sees you as her "safe" person and this lessens her anxiety which she is not able to process at this time with all her changes, plus being on a new drug and being unable to process all of that due to the changes dementia has wrought.

She really does need routine and structure with an uncluttered environment.  See the Alberta interventions in the above link.  Whether in a facility or at home, the dynamics are the same.  Sometimes a physical issue will contribute or kick off such a problem issue, but with  a little detective work, we can often find ways to lessen the problems.  

Having your mother on a routine in a structured environment and having her move about without overdoing is good for her; but I do wonder if while she is still getting acclimated to her residence changes if it may perhaps be a good idea to temporarily suspend PT for a couple of weeks while she acclimates to the many changes she already has.  Just something to think about and discuss with the doctor as appropriate.  PT can be restarted in a week or few if she will not have a negative outcome due to not having it at the present time.

Also, do look up Remeron and check out the side effects and see if they are something to be considered in your mother's situation.  Never stop a med without a physican's input and often their oversight; some meds should not be stopped cold turkey, so this too is something to ask the doctor about.

As for the eating; so many changes . . . . offer her any foods she likes. Sometimes our LOs do better with finger foods and may even have different times they eat from what we do.  Some even want finger foods while they watch a favorite TV program.  It will be trying this and that to see what works.  If she likes milk shakes, one can use Ensure and ice cream mixed in the blender to make a tasty nutritious shake. 

You are a blessing to your mother and I do understand you too have an adaptation period to work through; it will take a bit of time to get this all settled.   If someone else must be with your mother in the daytime while you work, just be sure it is the same person each day.  A person who is like a "friend" or "companion" that is excellent with people skills and is softly calming in personality would probably work best.

It will take time to get all the ducks in a row; but it will come together.  When it does, it is such a relief to one and all.  Nothing is perfect on this journey; there is only the best we can do under the circumstances with the challenges at hand.  We do find our way in one way or another.  
 

Let us know how you are doing and how things are going; we will be thinking of you and your mother and we truly do care.

 J.

Jo C.

Addendum:

Delusions:  My LO was delusion driven; I learned the hard way (and also by reading and gaining knowledge) that I should NEVER argue, point out my LOs not being factual, or try to educate, etc.  That causes more difficulties. Our LOs brain is damaged and they no longer function in our world reality; so we must learn to function at their world beliefs.  That was so hard for me to learn as it was logical to explain - ahem; except my LOs ability to use logic, reason or judgment was no longer present.  As I said, it too me some time to learn that the hard way. 

What is best is to not focus on the words our LO has said, but instead to focus on the emotions behind the words and validate the feelings. In this, sometimes we even accept blame for something we have not even done, but it is necessary to set things to rights. Once done, then refocus:

"Oh gosh Mom, I am so sorry I did not do (or I did something even if it is not true) . . . you are angry and upset and I understand; I would be upset too; I really am sorry.  I am here to help, (or I will do better next time - or I will not do that again and I am so sorry),  you get the idea .. . .

"Mother; your purse is missing and I can see that you are very angry; (she thinks I stole her purse), you know; I was cleaning up in here, (even if that is not true); and I may have moved things. Let me go and look (purse hunt ensues); (purse is found); "Mom here is your purse! I must have accidentally moved it when cleaning; I am so sorry and I will not do that again - hey; look out the window - there is the funniest squirrel . . . . (start to refocus off delusion) or . . . hey Mom, let's go in to the kitchen and get some tea and cookies . . . "  Or perhaps focus her on a small chore she can do like sorting laundry with socks, or folding towels, etc.  You get the refocusing idea.

When paranoia is coupled with a delusion that makes things a bit more challenging; the link below discusses that and how to deal with delusions, hallucinations and paranoia..

Hallucinations are something else and they do indeed often occur with Lewy Bodies Dementia.  In fact many LBD patients receive meds for that when hallucinations become a frequent and troubling dynamic.  The link for LBD from the above Post will have information about that:

https://www.nia.nih.gov/health/alzheimers-and-hallucinations-delusions-and-paranoia

As for an alternative living setting; it is understood that is a difficult one at this point due to the rabid DELTA COVID situation and the lack of so many NH or ALF staff members not being vaccinated.  (Have your mother and other family members been vaccinated?  If not, good idea to do so asap.)  If you bring someone into the house to assist with your mother during your work hours, just be certain that she/he has been fully vaccinated.  We have not even hit th peak for this new upsurge with DELTA and per news repors it is expected that the surge will be reached in October - but then we face the next significant upsurge in the winter. 

Even if this is not the time to establish an alternative living environment for your mother, it is still a good idea to have a "Plan B" in mind should this abruptly become a necessity. One can do the initial search online, then make visits to the places that seem acceptable.  One can then keep this in mind should the need arise so one does not have to run about under pressure and time constraints.

J.

Jo C.

Zaellen, are you still around?   If so, how are you doing? So hope that you know we are here in support.

J.

Melinda Sue

I’ve heard of folks getting caregiver certification in order to assist with a LO in a Memory Care Facility.  I would love to do this.  My LO was placed in Memory Care about a month ago.  I have to make an appt to see him and it’s only for a half hour a day

Does anyone have any information about this? 

Thanks so much!  

Zaellan

I'm still here.  The advice has been invaluable to me.  Just knowing I have support helps.  The neurologist decided to take her off the Remeron today.  Her hallucinations in the evening are worse, she still sees people and animals. Asking, "when is the girl going home?" ect..   I'm hoping after a while the hallucinations will lessen.  It will take a least a couple of days.

I do have another question.  I was reading the pdf on the 12 or 10 dementia symptoms (I'm not sure of the exact title).  In the article it described a symptom where the individual doesn't know where they are and "they want to go back home".  My mom has had this happen a couple of times.  She asks where she is living and when can she go back home, despite living with me for a year and a half.  My question is how do I deal with this?  The article I read was very vague and didn't give any tips.   In the past, these conversations have gone very bad for me.  That is how I got in the situation where she thought I was holding her captive. 

Any info would be appreciated!  Thanks for the support.

Jo C.

Hello again.  The following link is one of the most respected and certainly the single most helpful writings for carers and their families.   It is considered the most detailed and easy to understand writing regarding dementia and why things happen as they do including the chianges and behaviors.  It is the most recommended reading re dementia across the board.

It is, "Understanding the Dementia Experience," by dementia professional, Jennifer Ghent-Fuller.  In this important writing amongst the "whys", she does indeed explain the "wanting to go home" dyinamic.

 http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

As our Loved Ones (LOs) advance in their disease, the most recent memories are lost first and the person begins to go back to earlier times; this is their reality which we cannot argue with, point out their error, or trying to explain away the belief. Sometimes the person with dementia may even think we are someone from their past; their sister, brother, spouse, aunt, parent, etc.  We do not argue as that would be futile and contribute to the upset and resistance..

In this, the person is often in earlier years in their mind where they live in a different house way back in time when they were younger; some even begin to ask for their mother and father.

In this, to comfort, we often use "therapeutic fibs."  This eases the person whose beliefs are no longer of this time and place.

Perhaps:  "It is late, or we will get ready later and we will go tomorrow."  or a number of fiblet reasons:  "I have to get gas in the car, or the car is in the shop, we will go as soon as the car is back."  Or . . . or the house is being fixed as there was a . . . .plumbing issue, electrical issue, etc.  When it is repaired we will go.  Then refocus the LO onto something else.

Should the time arrive that she begins to ask for her parents, spouse or other LO who has been long gone, we do not tell hurtful blatant truth. We once again use fiblet:  "They are visiting Uncle John and Aunt Mary right now," they will be back soon."  Or, if a husband, father or other LO, they are busy at something else . . . "He is at work right now; he will be back tonight."  You get the idea.  In this way, we do not tell raw, hurtful truth about death - that will only cause our LO to feel the shock and mourn again and again and again. That is cruel; so we use the fiblet which is not a moral lapse whatsoever; it is a kindness for our sadly compromised LOs.

(Delusion:  Rigid false belief;   Hallucination:  Seeing or hearing something that is not there.)

Anyway; do read the above information, I think you will find it very helpful. It can also be printed off and given to family members who need to understand what is happening.  This article can also be purchased in book form if one wishes to do so, it is not expensive.

As for the hallucinations, if they are highly disturbing to our LO and affecting their quality of life, there is indeed medication that can help to relieve this.   My mother did not have hallucinations, but she became delusion driven and her life had become a living hell.  I had not wanted to have her on meds, so resisted; but I soon realized I had condemned my mother to the dread misery she was living with.  I consulted her dementia specialist in appointment who prescribed the appropriate med for her and it made a HUGE difference; it was almost a miracle and did indeed restore some of the quality of life that had plummeted.  I only wish I had done it sooner. It does though take a dementia specialist to do this appropriately especially if a LO happens to have Lewy Bodies Dementia or Frontal Temporal Dementia rather than Alzheimers Dementia.  Once again; an accurate diagnosis for dementia type is key to all else.

If our LO is driving us to distraction; imagine what it is like living inside their heads not only believing all the delusions and hallucinations; but FEELING them!  It would be hellish and truly affecting the very quality of life causing such misery. Since our LOs are unable to seek help for themselves, they must depend upon us to do it for them.  Therefore, we do so in order to bring peace to our LO and help restore as much quality of life that can be.  We would want no less done for ourselves if we were in such a position.

Do keep in touch and let us know how all is going.  You are on the right track and are being a good advocate.
 

 J.

harshedbuzz

Z-

My dad had a lot of hallucinations. Initially they were auditory; he heard kids upstairs playing or making a racket well past their bedtimes. People in our support group suggested my mother try joining dad in his world- she would tell dad she would "take care of it", then leave the room briefly and return announcing she's told the kids to go home or go to sleep. I did not believe dad would go for this, but it worked really well. 

The other piece to this is that not all hallucinations are unpleasant for the PWD. My aunt used to gaze out her window and see colorful birds at the feeders or the boats bobbing in Casco Bay (the views out the window of her cottage) when the view was really a small parking lot along the edge of the woods. Dad sometimes had his golf buddies drop in and once admonished me not to sit in a chair already occupied by his buddy Phil. Those I just played along with. He did have some weirder hallucinations- 12" tall people coming in from the courtyard through a small door in his room to dirty his bathroom- but generally I heard about those after they'd left even though he could still see the door. 

Dad was prescribed Seroquel which did seem to lessen his hallucinating to a degree. You might speak to a doctor about this. Dad saw a geriatric psychiatrist for his psychoactive medications as they are the specialists in this field. 

HB

Zaellan

I've said previously that my mom asks when she moved in with me.  She asks this everyday.  Will there be a time when she won't do this?  Just when I think she has accepted the arrangement she asks it again, sometimes a couple times a day. I think she feels out of touch with people and is trying to go back to a time she used to have connections.  We used to have people call her (family) and that worked well.  Now, that she is a bit different they have stopped calling. Any suggestions on how to make her feel secure?  Or is this something that I will have to learn to deal with it?

Berly1966

I totally understand how you feel.  It is just me and my Sister and I have been the one that has by default been deemed our Mother's caregiver.  I work 40+  hours per week and I am married but it is my job to also maintain human contact and check in on my Mother.  My sister is married with a child but does not work but refuses to drive 20 minutes to visit with our Mother.  She thinks a 10 minute phone call daily is enough.  She says she doesn't want to go and just sit with our Mother and that she gets tired of hearing the same stories daily.  On top of this my husband is in denial about my Mother's condition and thinks she is "playing me" and thinks I should just leave her alone.  She has become so withdrawn that I am her only human contact except for phone calls with her Sisters.

I am so exhausted and tired of trying to explain why someone needs to be with my Mom to make sure she is ok. 

I am fortunate that she can still take care of herself for the moment and she lives two houses away but this doesn't mean my Sister should just default all care to me.