Trying to Figure Out How to Help my Mom
Hello,
My Mom is 97 and recently had a major cardiac event and was diagnosed with Dementia at the same time. Although she was not perfect before, she was able to function and even be alone and independent during the night. In the past month, she has become a completely different person. She has the usual symptoms - sundowning (although now she is bad during the day also most days), anxiety, combativeness, refusing to take meds, etc. I am working with a psychiatrist over zoom to try to change her anti-depressants to effect some kind of change in her behavior.
But she often cries during the day because she knows that something is wrong. She knows that she comes out with things that are nonsequetors and she knows that she isn't making sense.
My question is ... are there such things as social workers or people who are specially trained to visit with patients like this to spend time with them on a regular basis, who know how to reassure them, and who know exactly what to say to them without telling them outright what is wrong with them (which I've been trying to avoid)?
Larry
Comments
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Hello, Larry. The answer to your dilemma is that the person who is with her 24/7 needs to be trained in dementia care. She cannot benefit from a counselor because she does not have the capacity to remember advice given. Also, you cannot have a counselor on call 24/7.
She needs to be in a safe, structured, simple environment. You do not say where she currently resides? If it is with you, then you will need to educate yourself in how to communicate with her in ways that cause the least distress (for both of you), by watching Teepa Snow videos on YouTube or reading anything by Naomi Veil about the validation method of communicating with dementia patients.
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Yes, I agree with Marta. She needs dementia caregivers who are trained in how to soothe, listen, redirect and care for an anxious person with cognitive issues. Don't discount the training, it's is important in knowing how to respond to questions, outbursts and so on. Don't expect her to be able to process or articulate her feelings ---- she can't, her brain isn't working right. A counselor or social worker won't help at all, she wouldn't be able to participate in counseling. And trust your instinct about not telling her what is wrong with her ---- it's like a gut punch every time you do it, then she forgets and keeps asking. Deflect any questions about this with gentle statements like "Everyone has memory issues at some point" and then change the subject if possible, The old rules have changed, you can no longer relate to your mother in the way you always have. It's all about comfort now --- soft music, her favorite foods, TV shows she likes that she may watch over and over again. Dementia is progressive, now is a tough time when she partially realizes there is something wrong. That will pass and she will forget that she forgets and can't follow conversations.0
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I thank you both for your insights. I really appreciate them. I will take a look at the videos and training. I didn't know that they exist and I'm grateful that you pointed them out.
However, I must also say that although your comments may follow from real world experience and may in fact be wise and valid, with all due respect, I find them callous and unempathetic.
I fully understand that Dementia affects the short-term memory. But I will differ with you that having an individual specifically trained in this spectrum of diseases wouldn't provide a benefit - even if it was only once every couple of weeks. And frankly, the fact that such people don't exist is a sad statement for the current state of affairs for dementia support.
Believe me, I understand that her behaviors have special ways of addressing them in order to calm her. But her consistent distress at knowing that she isn't right, at knowing that she's not constructing her thoughts properly, that she's confused and can't do what she used to do or understand what she used to understand, her crying ... and the resulting blunt questions to me like "What's Wrong with Me?" or "What's happening to me?" MUST have proper ways that a specially trained person could address ... and that in turn, could be "learned" by caregivers. Again, if such capabilities don't exist, that is a disgrace IMO.
Larry
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Larry,
Welcome to a world you never wanted to be in. Remember the folks in this forum discuss issues and offer help based on their own experience. I am floored you consider any one of these comments callous in any way. Some of us have been walking in these shoes for YEARS with multiple family members who have this disease, died way earlier in their lives of this disease and had the very worst of symptoms throughout their disease progression. Respectfully, it's not callousness but experience you are gaining insight from here.
The reality of this disease is not pretty. Sadly, the truth is the best you can do is really comfort them for the moment, redirect them and figure out medications to help keep them calm and safe. No amount of verbal, social work type discussion/therapy is going to give any type of lasting help as they can't fully understand their world anymore let alone cognitively rationalize or remember enough to put those types of remedies to good use. When you can't verbally understand or grasp concepts through communication it would make it impossible, right? I would highly recommend redirection, distraction and simple answers.
I am sorry this is happening to your Mom, especially as it sounds like she was living a pretty independent life until now. I lost my brilliant Father at age 77 to this disease in 2015. I am currently losing my beautiful Mom to the same, she just turned 77. We are looking to check her into care as she has progressed beyond what we can do in the home anymore.
The hardest part of this disease for you the caregiver will be accepting the new reality and understanding there are some things you just can't fix or bring back.
I would offer one piece of advice you could maybe benefit from immediately, find your Mom a good palliative care doctor. They can guide you on what to expect, what type of meds might work, put you in touch with a social worker who will do a home evaluation, etc. and really help bring a lot of resources to your door.
Good luck
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What Marta and Cynbar posted, I have copied down into my notebook for my own personal guidance. Although what they wrote is common knowledge, they individually put a most wise and comforting touch to their comments. PWDs do need a safe, structured, simple environment. PWDs do need caregivers who are trained in how to soothe, listen, redirect and give care. Alzheimer's Disease is not like other illnesses. Family members and caregivers need to change their expectations. The members here are the most knowledgeable and caring people anyone could want to meet in the world of caring for PWDs. It is amazing that so many people are willing to share despite their own difficulties.
Iris L.
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having an individual specifically trained in this spectrum of diseases wouldn't provide a benefit - even if it was only once every couple of weeks. And frankly, the fact that such people don't exist is a sad statement for the current state of affairs for dementia support.
Of course it would help but only for the time spent together. That is the reason for those of us who are caretakers needing to learn as much as possible about non-medical treatment.
Yes, it is very sad that even the "professionals" in care facilities have little to no education to care for someone with dementia.
"callous and unempathetic." The replies given here can seem so however I assure you that 99% come from someone who cares deeply about you and your mother. We understand as well care and will share with you the best support and information they can. Sometimes it is blunt and sometimes it come sugar coated but the reply is always from the heart and will be based on the information given.
It is good you are here and we look forward to getting to know both you and your mother. As you travel this very bumpy road please know we are along side.
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Hi Larry,
Mom is lucky to have such a caring son.
You are on the right track to optimize things for your Mom with the Geriatric Psychiatrist. Many don't realize that this is the 'go to' professional for the best prescription of this class of medications for anxiety, upset and agitation. You have achieved so much just by working with this physician specialty.
It must be very painful for you to see Mom have this decline.
You are also correct to NOT have 'that conversation' with Mom about her disease. Cognitively, she no longer has the ability to understand, or process, or retain useful information. This is a terribly hard thing for us children to accept. We are now the person responsible for soothing them (as best as possible - varies by person and disease presentation).
Whenever I was overwhelmed and stressed, I paused, and chanted the mantra shared by a previous, very wise, former caregiver on these forums, by the name of grassflower:
"The best answer is the one that brings the most comfort"
Not the brutal truth, or honesty. Fiblets become very helpful and redirections critical. Another poster has already mentioned Teepa Snow.
I hesitate to go to my final point - I hope the psychiatrist can help your Mom with medications. But brain injuries, neurological decline, sometimes affect the centers of the brain responsible for emotion. More than 1 resident at my LO's facility was very emotional and cried most of the day. It was a very, very difficult phase of the disease for her family and caregivers. Your MD can discuss with you whether this is a component of what is happening for Mom.
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Hello Larry and welcome. It is difficult for most of us when we see the changes in our Loved Ones (LOs) and there is also a long learning curve for us in what these changes are and what they mean and how they do affect our LOs in reality. We need to educate ourselves and read, read, read to gain knowledge. When my mother developed dementia, I labored under certain beliefs and had to learn the hard way with some of them, that I was not in the right ball park so to speak. I had to learn that my dear mother's brain was already compromised for judgment, reasoning and capabililties despite her seeming rather high functioning. (She really wasn't, it was me who was not seeing the reality and had to learn.)
I strongly recommend going online and finding, "Understanding the Dementia Experience," by Jennifer Ghent-Fuller. It is a highly respected writing by a dementia specialist that is a primer for what dementia really is and how it affects our LOs and the why's of certain behaviors. It is available in pdf at no cost and worth printing it off to keep and refer to over and over.
One of the most important things is to have a good care team. In this, one needs their primary care physician for their primary care; and the best approach to give best results is to also have a dementia specialist. It is extemely important to have an accurate diagnosis for type of dementia. There are multiple different types of which Alzheimer's is only one. This is crucial to all else as medications used in one type of dementia may be strongly contraindicated in another and cause unintended negative results. A good Neurologist who sees dementia patients as a routine part of his or her practice is excellent with this for making an accuratea diagnosis for dementia type.
If one's LO has abrupt changes in cognition and function one would want to have some labs done and to have meds reassessed for their possible impact. It is also interesting that our LOs often develop a "silent" urinary tract infection which causes no pain, burning or other physical symptoms, but can make changes in cognition, funciton and most of all, in behaviors. It is best to have the MD order labs to rule out a UTI and to be sure he/she orders a C/S. The over the counter dipsticks come with a high rate of false readings, so best to have this done at a lab.
Also, if it is now possible to see ones primary and specialist in person rather than on Zoom; (this is now available more and more), if you can do this, then that is best to get your mother in to be seen in person.
We also learn to never, ever point out our LOs deficits or to "remind" them that the have a problem issue as you have mentioned. To do so is unkind and counterproductive for our LOs. She may independently realize she has an issue, in that case, it is best to be very supportive. Learning to validate her feelings without pointing our her deficits is the kind way to interact and support.
Your mother will do best if she has a very structured and organized environment with little change. The support she needs is really on a 24 hour continuum. Having a person, such as a social worker come in at intervals will be helpful ONLY in the immediate time she/he is there making a visit. It will unfortunately not be helpful in the long term, even with hours, after the professional has left. This is a sad state of affairs, but a reality. If it is helpful for yourself, then it is worth a try. There are indeed professionals with a good educational background in dementia care, it does take time to screen and find such help. Each geographic area has its own dynamic for this.
You may want to contact the Alzheimer's Assn. 24 Hour Helpline at (800) 272-3900 to ask about this. 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 highly supportive, have much information and may be able to find assistance contact in your area.
Please let us know how things are going; we do care and will be thinking of you and your mother. Also, no callousness here nor lack of empathy. We do not see each other in person, so sometimes, especially when someone is new, one may get an unintended impression. Do know that this is the warmest and most helpful place you will find on your long journey with your mother. So much experience from those who are far longer down the path and that is quite valuable as I learned as I traveled down a similar road.
J.
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larryeny wrote:
However, I must also say that although your comments may follow from real world experience and may in fact be wise and valid, with all due respect, I find them callous and unempathetic.
I am sorry the comments from Marta and Cynbar felt callous to you. FTR, they are among the most empathetic and gentlest participants on this site. Many who post here, have insight from living the experience with a number of friends and family members who have different kinds and presentations of dementia.I fully understand that Dementia affects the short-term memory.
It does, but that's not all of it. It also impacts working memory which is needed to learn new strategies to address emotions as well as executive function which is needed to recognize that a situation would benefit from the application of those new strategies.
Not long after dad's diagnosis, before dad had developed complete anosognosia, we'd hoped to get him some talk therapy to address his drinking which needed to stop in light of his diagnosis. I was able to find an inpatient program that would accept him but they were honest in that they didn't anticipate that dad would be able to learn of access the CBT-based therapy as needed. Dad had a lot of cognitive reserve and was able to score in the average range for his age/education level but still he couldn't learn new things- he couldn't learn to use the simplest TV remote or flip phone by the time he was diagnosed.
But I will differ with you that having an individual specifically trained in this spectrum of diseases wouldn't provide a benefit - even if it was only once every couple of weeks. And frankly, the fact that such people don't exist is a sad statement for the current state of affairs for dementia support.
The MSWs who work in dementia care typically work to support families in putting together an appropriate care plan. They work to match families with local resources be it facilities, day programs and the such. Often they are hired when the POA doesn't live near the PWD to act as a set of eyes and ears on the ground.
Finding behavioral/mental healthcare for elderly can be very challenging. Many traditional therapists and psychiatrist do not accept patients over a certain age threshold. When dad was diagnosed, my mom (who does not have dementia) was understandably upset. She'd always been anxious and prone to depression so I looked to get her in with a specialist. I did find her a general psychiatrist who was new to the practice where my son is seen; normally they don't see people over 65.
Dad had a geriatric psychiatrist who managed his psychoactive meds. I suspect (and his geripsych agrees) that dad likely had undiagnosed mental health issues most of his life for which medication is necessary. In addition to meds, the man offered dad a reassuring appointment every 3-6 months. These people are in high demand, so I don't know that you could make it a monthly appointment without a medical need to do so.
That sad, dad's sense of time was such that he wasn't really able to differentiate around the passage of time- so weekly or every 3 months were kind of the same for him.Believe me, I understand that her behaviors have special ways of addressing them in order to calm her.
That's great. It's clear you are a real support and ally.
But her consistent distress at knowing that she isn't right, at knowing that she's not constructing her thoughts properly, that she's confused and can't do what she used to do or understand what she used to understand, her crying ... and the resulting blunt questions to me like "What's Wrong with Me?" or "What's happening to me?"
This was the most difficult part of the journey for me- when dad still had enough cognition to understand that something had changed and be terrified by that but not be able to do anything about it.
Medication can help around this sort of anxiety. It doesn't make it all go away or sedate the person, it just takes the edge off so that validation and redirection can work for them.
MUST have proper ways that a specially trained person could address ... and that in turn, could be "learned" by caregivers.
I learned validation mostly from people here and in our local ALZ support group.
Most Again, if such capabilities don't exist, that is a disgrace IMO.YMMV.
HB
Larry
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Hello, again, Larry. Perhaps I should have stated in my reply to you that I am a PCP with a Medicare practice, and, unfortunately, a large number of dementia patients.
I am sorry you found my reply callous and unsympathetic.
You have received many spot on replies.
I hope you will allow this community to inform you and comfort you.
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glitterqueenscare wrote:
Larry,
Welcome to a world you never wanted to be in. Remember the folks in this forum discuss issues and offer help based on their own experience. I am floored you consider any one of these comments callous in any way. Some of us have been walking in these shoes for YEARS with multiple family members who have this disease, died way earlier in their lives of this disease and had the very worst of symptoms throughout their disease progression. Respectfully, it's not callousness but experience you are gaining insight from here.
The reality of this disease is not pretty. Sadly, the truth is the best you can do is really comfort them for the moment, redirect them and figure out medications to help keep them calm and safe. No amount of verbal, social work type discussion/therapy is going to give any type of lasting help as they can't fully understand their world anymore let alone cognitively rationalize or remember enough to put those types of remedies to good use. When you can't verbally understand or grasp concepts through communication it would make it impossible, right? I would highly recommend redirection, distraction and simple answers.
I am sorry this is happening to your Mom, especially as it sounds like she was living a pretty independent life until now. I lost my brilliant Father at age 77 to this disease in 2015. I am currently losing my beautiful Mom to the same, she just turned 77. We are looking to check her into care as she has progressed beyond what we can do in the home anymore.
The hardest part of this disease for you the caregiver will be accepting the new reality and understanding there are some things you just can't fix or bring back.
I would offer one piece of advice you could maybe benefit from immediately, find your Mom a good palliative care doctor. They can guide you on what to expect, what type of meds might work, put you in touch with a social worker who will do a home evaluation, etc. and really help bring a lot of resources to your door.
Good luck
Thank you. I am working with a geriatric psychiatrist. I'm sorry for what you have gone through and are going through also.
Larry
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Victoria2020 wrote:No one is asking for someone to rebuild their brain. Please go back and read my statement. Thanks for your input.larryeny wrote:
I thank you both for your insights. I really appreciate them. I will take a look at the videos and training. I didn't know that they exist and I'm grateful that you pointed them out.
However, I must also say that although your comments may follow from real world experience and may in fact be wise and valid, with all due respect, I find them callous and unempathetic.
I fully understand that Dementia affects the short-term memory. But I will differ with you that having an individual specifically trained in this spectrum of diseases wouldn't provide a benefit - even if it was only once every couple of weeks. And frankly, the fact that such people don't exist is a sad statement for the current state of affairs for dementia support.
Believe me, I understand that her behaviors have special ways of addressing them in order to calm her. But her consistent distress at knowing that she isn't right, at knowing that she's not constructing her thoughts properly, that she's confused and can't do what she used to do or understand what she used to understand, her crying ... and the resulting blunt questions to me like "What's Wrong with Me?" or "What's happening to me?" MUST have proper ways that a specially trained person could address ... and that in turn, could be "learned" by caregivers. Again, if such capabilities don't exist, that is a disgrace IMO.
Larry
Larry - The brain of a person with dementia is damaged, no counselor can rebuild the brain -- to think they can is wistfully naive. I agree a palliative care doctor and or hospice would benefit both your mother and you. The more acceptance you can find now the easier the journey will be.
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jfkoc wrote:Thank you. I appreciate it.
having an individual specifically trained in this spectrum of diseases wouldn't provide a benefit - even if it was only once every couple of weeks. And frankly, the fact that such people don't exist is a sad statement for the current state of affairs for dementia support.
Of course it would help but only for the time spent together. That is the reason for those of us who are caretakers needing to learn as much as possible about non-medical treatment.
Yes, it is very sad that even the "professionals" in care facilities have little to no education to care for someone with dementia.
"callous and unempathetic." The replies given here can seem so however I assure you that 99% come from someone who cares deeply about you and your mother. We understand as well care and will share with you the best support and information they can. Sometimes it is blunt and sometimes it come sugar coated but the reply is always from the heart and will be based on the information given.
It is good you are here and we look forward to getting to know both you and your mother. As you travel this very bumpy road please know we are along side.
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A
King Boo wrote:Appreciate your help. Thank you.Hi Larry,
Mom is lucky to have such a caring son.
You are on the right track to optimize things for your Mom with the Geriatric Psychiatrist. Many don't realize that this is the 'go to' professional for the best prescription of this class of medications for anxiety, upset and agitation. You have achieved so much just by working with this physician specialty.
It must be very painful for you to see Mom have this decline.
You are also correct to NOT have 'that conversation' with Mom about her disease. Cognitively, she no longer has the ability to understand, or process, or retain useful information. This is a terribly hard thing for us children to accept. We are now the person responsible for soothing them (as best as possible - varies by person and disease presentation).
Whenever I was overwhelmed and stressed, I paused, and chanted the mantra shared by a previous, very wise, former caregiver on these forums, by the name of grassflower:
"The best answer is the one that brings the most comfort"
Not the brutal truth, or honesty. Fiblets become very helpful and redirections critical. Another poster has already mentioned Teepa Snow.
I hesitate to go to my final point - I hope the psychiatrist can help your Mom with medications. But brain injuries, neurological decline, sometimes affect the centers of the brain responsible for emotion. More than 1 resident at my LO's facility was very emotional and cried most of the day. It was a very, very difficult phase of the disease for her family and caregivers. Your MD can discuss with you whether this is a component of what is happening for Mom.
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Jo C. wrote:
Hello Larry and welcome. It is difficult for most of us when we see the changes in our Loved Ones (LOs) and there is also a long learning curve for us in what these changes are and what they mean and how they do affect our LOs in reality. We need to educate ourselves and read, read, read to gain knowledge. When my mother developed dementia, I labored under certain beliefs and had to learn the hard way with some of them, that I was not in the right ball park so to speak. I had to learn that my dear mother's brain was already compromised for judgment, reasoning and capabililties despite her seeming rather high functioning. (She really wasn't, it was me who was not seeing the reality and had to learn.)
I strongly recommend going online and finding, "Understanding the Dementia Experience," by Jennifer Ghent-Fuller. It is a highly respected writing by a dementia specialist that is a primer for what dementia really is and how it affects our LOs and the why's of certain behaviors. It is available in pdf at no cost and worth printing it off to keep and refer to over and over.
One of the most important things is to have a good care team. In this, one needs their primary care physician for their primary care; and the best approach to give best results is to also have a dementia specialist. It is extemely important to have an accurate diagnosis for type of dementia. There are multiple different types of which Alzheimer's is only one. This is crucial to all else as medications used in one type of dementia may be strongly contraindicated in another and cause unintended negative results. A good Neurologist who sees dementia patients as a routine part of his or her practice is excellent with this for making an accuratea diagnosis for dementia type.
If one's LO has abrupt changes in cognition and function one would want to have some labs done and to have meds reassessed for their possible impact. It is also interesting that our LOs often develop a "silent" urinary tract infection which causes no pain, burning or other physical symptoms, but can make changes in cognition, funciton and most of all, in behaviors. It is best to have the MD order labs to rule out a UTI and to be sure he/she orders a C/S. The over the counter dipsticks come with a high rate of false readings, so best to have this done at a lab.
Also, if it is now possible to see ones primary and specialist in person rather than on Zoom; (this is now available more and more), if you can do this, then that is best to get your mother in to be seen in person.
We also learn to never, ever point out our LOs deficits or to "remind" them that the have a problem issue as you have mentioned. To do so is unkind and counterproductive for our LOs. She may independently realize she has an issue, in that case, it is best to be very supportive. Learning to validate her feelings without pointing our her deficits is the kind way to interact and support.
Your mother will do best if she has a very structured and organized environment with little change. The support she needs is really on a 24 hour continuum. Having a person, such as a social worker come in at intervals will be helpful ONLY in the immediate time she/he is there making a visit. It will unfortunately not be helpful in the long term, even with hours, after the professional has left. This is a sad state of affairs, but a reality. If it is helpful for yourself, then it is worth a try. There are indeed professionals with a good educational background in dementia care, it does take time to screen and find such help. Each geographic area has its own dynamic for this.
You may want to contact the Alzheimer's Assn. 24 Hour Helpline at (800) 272-3900 to ask about this. 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 highly supportive, have much information and may be able to find assistance contact in your area.
Please let us know how things are going; we do care and will be thinking of you and your mother. Also, no callousness here nor lack of empathy. We do not see each other in person, so sometimes, especially when someone is new, one may get an unintended impression. Do know that this is the warmest and most helpful place you will find on your long journey with your mother. So much experience from those who are far longer down the path and that is quite valuable as I learned as I traveled down a similar road.
J.
Thank you.
I am already working with a Geriatric Physician and a Geriatric Psychiatrist. I did take her to the neurologist in the area with the most Dementia experience, but other than initially diagnosing her (Alzheimers), he hasn't been terribly involved. In fact, he directed me to alz.org.
I am way ahead of you on the UTI possibilities. I had her tested a couple of weeks ago, in fact, and it did come up positive. She was on an antibiotic for 10 days ending last Friday, but there hasn't been much improvement.
I have been down the road of the hotline and the care consultant. To be perfectly honest with you, I didn't find it very helpful. I found the suggestions kind of "throwing paint up against the wall" and I knew they weren't going to work ... and sure enough, they didn't. I was also given a short list of geriatric psychiatrists, none of whom would accept my Mom or who were accepting new patients.
Thank you for your support and your help. I'll continue to do my best with what I have.
Larry
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Victoria2020 wrote:Larry- You mentioned a cardiac event, I'm sure you've discussed the emotional aspects of that with the cardio team for your mother. Slang is "cardiac blues". Even if she doesn't understand the import of the event, her body still went through a shock that can linger and present emotionally.
Yes, although I'm not sure that the dementia "allows" her to experience the cardiac blues. What's impacting her most as a result of the cardiac event is a severe depression in her cardiac capacity (CHF) so she can no longer stand at the sink to wash herself nor at times even wipe herself and she spends much of the day dosing (probably also because she doesn't sleep well due to the dementia).
On top of that she had COVID at 97 a year ago. I didn't see the dramatic cognitive changes back then (although there were some subtle ones), but given what I'm being told, it's not unreasonable for that to be affecting her now.
So all together she's in quite an emotionally depressed and upset state. I provide encouragement every day especially when I see her do something good or something she hasn't been able to do in a while. We have a PT coming in twice a week and I truly believe that will help her emotionally if not also physically. We are tweaking her cardiac meds and that should help a bit. And I make sure to push her to go outside as close to every day as I can because I believe the warmth (now that it is spring) and the sunlight will help her. I also give her lots of affection and help. I cook for her and try to make her her favorite dishes (although she's having GI issues also right now which makes it difficult).
So we shall see what happens.
Thank you for your help.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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