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PLEASE HELP ME(1)
eli47
Posted: Saturday, December 7, 2019 8:23 PM
Joined: 3/25/2019
Posts: 31


My mom's dementia has progressed rapidly and yet we have no mri "diagnosis" due to her clausterphobia.  Have a dr appt with UTSW Dec 12 and, my dad believes, that this is a teaching school so the time spent with my mom will be much more, since these Drs work on salary and not per patient.  PLEASE DONT LEAVE YET.  My question is that my mom has cancelled every date with her family, ( grand kids, great grandson, Thanksgiving and now Christmas.  She tells my dad she just doesn't feel good and isn't up to it but i KNOW she is embarassed about what she doesn't know.  Im not saying she doesnt want to see people, and certainly she loves them, but she and I are closer than she is to that side and they aren't understanding.  I told them, "Hey, maybe call her!"  So anyway, if you have read this far and I hope you have, the question is,  "When grandma doesn't want to see you but you know she wants to see her family, what have YALL DONE?  My dad wont do anything to upset her, but to keep them out is to say goodbye to her.  They are not ready to do that.  Please help me . I am 6 hours away but go a week every month and she doesnt even want me there, I dont think.  She and I have always been closer than she and my brother.  Thanks in advance

eli47
Posted: Saturday, December 7, 2019 8:47 PM
Joined: 3/25/2019
Posts: 31


12 views and no response.  Guess no one has been in this situation?  I know they all differ.
TessC
Posted: Saturday, December 7, 2019 8:53 PM
Joined: 4/1/2014
Posts: 5006


Not knowing your mother, I cannot say for sure what is best for her-only you can make that call-but I did the things that would keep my mother calm and content. If she didn't want to see people-I did not ask her to. But she was usually OK with family coming over as long as I was there to entertained them and she could retreat to her own rooms after awhile. It is very taxing on our LOs when they have to "maintain" a facade of control over their thoughts and emotions. Plus noise, stress and changes are hard on our LO's. I also was the buffer between her and anyone who came to the house. If I noticed one of the kids getting rowdy I stopped them and if an adult started to ask too many questions, I distracted them to give my mother space. 

If you tell your mother you will be there to help her with the food, entertaining, clean up and even help to keep her comfortable-maybe she will feel like having them over to her home. I would not take her to their place-she may feel overwhemled and not in control. Good luck!


Jo C.
Posted: Saturday, December 7, 2019 10:49 PM
Joined: 12/9/2011
Posts: 10323


 Hello Elizabeth and welcome.   This is a bit long and I apologize in advance for that.   It is first important to let you know that this is not like a chat room; it is nightime and Members live all over the U.S. and even out of country where time of day are different, so do not give up looking for replies tomorrow and for the next few days.  I usually gave it a week to read new input for my Posts as Members are not online every day.   Also, many people read but have no advice or input if they have not experienced the same issues, so that there have been readers but no responses is not unusual.

That being said, I am sorry for what is happening, and having been there, I can sure understand the stress and frustration.  Living six hours away from your parents complicates matters even more.

You mention your mother was diagnosed with Mild Cognitive Impairment, (MCI).  This is like a "pre-dementia" sort of diagnosis where the brain is changing and symptoms have appeared but the person is not yet in full blown dementia.  Sometimes, MCI will not develop into dementia and other times, in time, it does indeed do so.   Here is a good link about MCI:

https://www.mayoclinic.org/diseases-conditions/mild-cognitive-impairment/symptoms-causes/syc-20354578

 It is really good to do much reading about dementia; a LOT of reading.  There is so much to learn and the learning curve takes much time.  Every single person with dementia is different from the next.  A good bit of writing by a dementia specialist is available at no cost and it is excellent at explaining the dynamics as dementia moves forward.   Here is a link to Jennifer Ghent-Fuller's writing, "Understanding The Dementia Experience":

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

I found it best with my difficult mother to never, ever mention the word "dementia," and never to refer to her that she was having memory problems; I found out the hard way that such input caused her to refuse appointments and dig her heels in and become much more difficult to help.

Your mother, having changes within her brain may be like many of our other Loved Ones in which they find it extremely upsetting to have ANY changes at all; routine and structure are key to keeping things on an even keel for a LO with dementia; changes and lack of routine will be very upsetting and cause more difficulties.  This really does include having visitors in the house and much noise or activity around them for many of our LOs. Sometimes even loud music or certain TV programs can be upsetting.

In this, she may also be experiencing difficulty processing things secondary to damage within the brain, therefore, having visitors and others in her home may cause her significant distress and feelings of severe upset which can be a dreadful tribulation for her.  I would try to honor where she is at this point in time and let her be the guide for what she is able to tolerate and not tolerate.   I found out that my thinking regarding my LO not getting enough activity or enough visitation was judging it by MY feelings as a person without dementia; things are very different for those who have dementia.  We have to sort of enter their world as they are not able to enter ours.  This is at first difficult to do but with experience, it becomes easier.

The relatives are not "saying goodby to her," they are honoring her emotional and neurological needs right now at this point in time.  That will change as time moves forward.   It is not at all about what the relatives are ready to do now, it is about what is most compassionate and kind for your mother and honoring where she is at this time in her disease process.   As said, we must enter their world reality as they cannot enter ours as we are and this will change in the future.

Here is another resource for you, This is also probably a situation in which it would be helpful 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 who specialize in dementia and family dynamics.   They are good listeners, very supportive, have much information and can often help us with our problem solving.   You will get one on one contact in real time and can ask questions and discuss what is happening.

 

Refusing meds is not unusual, and if some of the meds are making her feel a bit ill, that may also be a reason why she resists taking them.   Aricept, for many of our LOs can cause the feeling of stomach upset and for some can cause cramps or nausea or diarrhea.  A specialist must make the accurate diagnosis for type of dementia as meds for one type can be contraindicated in another and make things even worse, so hopefully, all of this has been or is being done along with assessment for untoward side effects.

This will all evolve over time again and again; the challenge of change is what dementia seems to be all about..  The Members here are very supportive and all mean well, so do give us all a chance to try and help to the best of our ability as we understand from our own personal experience.

 Best wishes,

 J.


eli47
Posted: Saturday, December 7, 2019 11:50 PM
Joined: 3/25/2019
Posts: 31


Thank you so much.
eli47
Posted: Saturday, December 7, 2019 11:54 PM
Joined: 3/25/2019
Posts: 31


Thank you, thank you, for being someone who actually reached out. I do know that everyone is traversing their own journey. I have been through this with both my daughters who have severe scoliosis. I have copied and pasted your response so I can try to convince my family it’s not all about them for Christmas. Anyway. You hit the nail on the head and I can’t thank you enough.
harshedbuzz
Posted: Sunday, December 8, 2019 3:46 AM
Joined: 3/6/2017
Posts: 1942


eli47 wrote:
My mom's dementia has progressed rapidly and yet we have no mri "diagnosis" due to her clausterphobia.   

I feel her pain. I have an awful time with claustrophobia that sometimes strikes out of nowhere. I was able to accomplish one in a tradition unit with the use of a single Xanax. Another option would be to find a facility with an open MRI.

 Have a dr appt with UTSW Dec 12 and, my dad believes, that this is a teaching school so the time spent with my mom will be much more, since these Drs work on salary and not per patient. 

This is likely the best place to start in your community. I don't know how pay structure impacts care, but their neurology department is well rated. Often teaching hospitals will offer comprehensive services all in one place with the support of researchers. As a teaching hospital, she'll likely have many eyes on her which is good.

 PLEASE DONT LEAVE YET.  My question is that my mom has cancelled every date with her family, ( grand kids, great grandson, Thanksgiving and now Christmas.  She tells my dad she just doesn't feel good and isn't up to it but i KNOW she is embarassed about what she doesn't know. 

You know your mom, if you think this is the case, it probably is. My dad actively avoided family with obnoxious behavior as well. In his case, fear was the primary driver. Early on he had a sense that he was struggling in some areas and knew that my husband and I, especially, would recognize this and that we would rob him of independence. Dad and I had a difficult relationship and having his less-favored child in the role of decision maker probably terrified him on some level. By the time dad was diagnosed, he'd driven away the rest of our small family; I inserted myself at intervals if only to keep an eye on my mom's welfare. 

Another piece to this could be losses associated with the disease. Dementia is not just about memory loss, it's also about losing reasoning skills like executive function which impacts planning. The thought of putting on a Thanksgiving dinner may be something she knows is beyond her- shopping for all the ingredients, recalling who likes what, staging the cooking so that everything is done on time. Another thought is that she might be dealing with some apathy which is another dementia symptom that is sometimes exacerbated by co-occurring depression. Many PWD lose interest in things like were previously very important to them- hobbies, participation in their house of worship, their families aside from their primary caregiver.

 Im not saying she doesnt want to see people, and certainly she loves them, but she and I are closer than she is to that side and they aren't understanding.  I told them, "Hey, maybe call her!"  

Another thought about this could be that your mom gets overwhelmed by family and might do better with visits from individual children rather than everyone at once. Some time during the mid-stages of the disease, dad when from loving the idea of being the center of attention to "get off my lawn". We held a large dinner party for his 80th birthday party which her thoroughly enjoyed. When he turned 82, we had dinner as a party of six with his brother which he also enjoyed. Six months later, we took my mom out as a party of six and he was miserable- he didn't understand why I included his grandchildren rather than his brother and whined the entire time. By Thanksgiving, we decided to bring food to his house as a small group. He ate, got up mid-meal and sat on the couch where he glowered at us.


So anyway, if you have read this far and I hope you have, the question is,  "When grandma doesn't want to see you but you know she wants to see her family, what have YALL DONE? 

It's hard to say. We kept celebrating as a means of supporting my mom in the lonely task of caregiving- she looked forward to having her people around. As the disease progressed, dad's sort of traveled back in time emotionally. When he spoke of family, it was more about his parents and brother rather than his grandchildren. FTR, my parents had been devoted grandparents to my late sister's children spending weekends and vacations with them. For a time when their mom was sick and after she died, my nieces lived with my parents. And yet dad had lost the connection. LOL, he even came to referring to them as his descendants rather than grandchildren. He once mistook a picture of his Japanese-American urologist for my son. My son looks more like Ed Sheeran. 

 My dad wont do anything to upset her, but to keep them out is to say goodbye to her.  They are not ready to do that.  Please help me . I am 6 hours away but go a week every month and she doesnt even want me there, I dont think.  She and I have always been closer than she and my brother.  Thanks in advance

Unfortunately, this is your dad's call. He's in charge here so long as he is next-of-kin and primary caregiver. I can appreciate him wanting to placate her as he loves her and doesn't want her any more upset than is her usual baseline. Plus, if visits or outings undermine her mood, he is the one who lives with the fallout so it is his call. Perhaps short visits from individual families or children would be more tolerable for her. Perhaps with the disease progression or with medication this will become less of an issue. 

It's good that at least one of you has eyes-on. The best thing you can do is support your dad in this and look out for his well-being. One third of all caregivers die before the person for whom they are caring. You'll want to make sure he is attending to his own health and also learn about your mom's condition should you need to take over if he is not longer able to. To that end, you need to talk to your dad about financials and his POAs because your mom can't make those sorts of decisions on her own.


Good luck.
HB





Jo C.
Posted: Sunday, December 8, 2019 8:22 AM
Joined: 12/9/2011
Posts: 10323


Elizabeth, I forgot to mention the dynamic of our Loved One having, "anosognosia."  This is a term that means our LO has lost the ability to recognize that they have an illness or condition  This is not unusual; many of our LOs have had such a dynamic.

One cannot argue or tell them about the facts, the person with anosognosia will not process that and it can induce anger and resistance.  Anosognosia can be full on-going, but sometimes it may wax and wane.   In anosognosia, one just cannot process they have a condition, so this too can play into why a LO will not take their meds; after all, if they believe they are do not have a condition, they do not need meds.  And if the meds have negative side effects, this compounds the situation.

One should never argue with a person with dementia; that does no good and only makes things worse. One cannot correct, point out or educate; that is usually not processed and even can induce resistance and mistrust.  If reality is processed for a short period of time, it usually does not stick when anosognosia is in the mix.  Very confusing for the Caregiver. 

If our LO has a skewed belief regarding their condition, it is their absolute reality - it is as real to them as the chair you are sitting on.  No amount of arguing or pointing out will help; it will only hinder.

What does help once our LO has reached this state, is to "validate" our LOs feelings.  If sad, or angry, or whatever; if we acknowledge that, "It must be upsetting to feel angry; I am sorry (for whatever) and I will help with that (or, I will do better next time, or . . . . I will not do that again); even if we fib a bit to fit in with our LOs reality; then after validating, refocus the person right away onto something else; a different topic of conversastion, distraction to look at something - even a bird out the window, or getting coffee and cookies, or doing a small chore.  You get the idea.

There are books written regarding Validation Therapy, many are written by Naomi Feil. Everyone, whether dementia is on board or not, want to be validated, so it is a very good tool in the Caregiver's Toolbox.

Sometimes another tool of necessity is that of the, "Therapeutic Fib."  Lying does not come easy to most of us, but sometimes if a LO has reached a certain state where resistance is overwhelming when it comes to care such as doctor's appointments or other important matters, one cannot use bald facts to gain coooperation.  So; the use of a fiblet gets things put to rights and keeps our LOs from having unhealthy meltdowns and get care addressed.

Most of us using fiblets out of necessity are not comfortable, but we soon find that it can really help our LO.  I think of the Robert Brault quote,  "Today I bent the truth to be kind, for I am far surer of what is kind than I am of what is true."

As said before, there is a long learning curve in dementia caregiving and we all start off sruggling on the first rung; but as we become more knowledgable we gain speed in our abilities and that is very helpful.  Also, coming here to read and to share is also very supportive and most often, very helpful.

J.
 

J.


stedyfred
Posted: Monday, December 9, 2019 1:08 PM
Joined: 9/21/2012
Posts: 479


Magnetic resonance imaging machines many years ago would be very difficult for a person with claustrophobia. I had several of them and the first one bothered me. When I went for my additional mri"s  there was a mirror as well as air filtered into you and it was basically non-claustrophobic. Good luck.
Suziesb
Posted: Monday, December 9, 2019 9:46 PM
Joined: 5/22/2018
Posts: 258


Elizabeth, I'm glad you hung in...it's true it sometimes takes a few days or more to get some responses. I frequently read this board but if I'm busy or ultra tired caregiving mom after my  job during the day then I might not every day. It's such a big help, though!

 With mom's AD diagnosis it's so tiring for her to have people over for too long. Even more than a few hours. And she feels embarrassed that she can't talk like she wants to, so it becomes a strain for her since she sits quietly and tries to follow conversations swirling around her. 

She was extremely exhausted after Thanksgiving, even with just our small family gathering. It took several days with having days at home in her same routine, and lots of restoring sleep in order for her to feel recovered. 

What if you encouraged cards and letters from people? How is she with phone calls? She might do best with those types of "visits" for now.

Take care and keep coming here for support!


GemsWinner12
Posted: Friday, December 13, 2019 12:28 PM
Joined: 7/17/2017
Posts: 399


I agree with other posters who have stated that company and gatherings are tough on those with dementia/Alzheimer's. It's draining even for many of us who don't have Alzheimer's or dementia!  I would encourage small gatherings or one-on-one visits with friends and family members coming over to the familiarity of her house.  Unfortunately, it will become more and more difficult for her to get out on her own; you might offer to drive with her to Target or Walmart for essentials and to get her out of the house once in a while when you can.  A few larger grocery stores offer free delivery of groceries, which you could set up for her.  

My heart goes out to you at this difficult time; holidays will now be different for you and your loved one. She can't be expected to act socially appropriate any longer, and you will need to start telling her friends and family why, in your own way and at your own pace.