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New to Diagnosis -- I'm just so sad
CStrope
Posted: Friday, November 20, 2020 10:19 PM
Joined: 11/19/2020
Posts: 64


For the 34 years of my marriage, I have been the strong one, the one that everyone turns to, the one that always knows the answer.  Now I'm finding out my husband most likely has Alzheimer's and I'm scared.  Scared I can't handle any more than I already do, scared of what it will be like when he leaves me, scared I'll resent him when things get bad.

18 months ago a local doctor suggested he have an MRI because they felt he was having issues.  DH was furious, refused the MRI and convinced everyone that they were wrong.  Now here we are waiting for cognitive testing after finally having that MRI.  The results stated signs of "significant early dementia".  But no doctor has called to let us know what that means, and I really don't know what lies ahead.  He was a wonderful high school science teacher for 25 years, and now he doesn't know my birthday.  Since he is 8 years older than me, I'm still working.  I carry our health insurance and take care of all our finances and household duties.

We live in a very small rural  community in WI, with very few resources for dealing with this type of thing.  I just feel like there is so much on me.  My adult daughter lost her job in April during COVID, my son is trying to get a business started with a friend building houses.  I'm lucky enough that my employer allows me to work from home.  I am very thankful for that, especially not knowing what lies ahead.  

Thank you to anyone that reads this and listens to me.  I've always been able to handle everything and be the one that everyone depends on.....but I just don't know if I'm going to be able to handle all of this on my own.


60 falcon
Posted: Friday, November 20, 2020 11:52 PM
Joined: 11/16/2018
Posts: 129


You came to the right place, welcome.  We've all been in your shoes and know how difficult it is to come to terms with the sad reality that one of our loved ones likely has some kind of dementia. There's a lot of folks here to listen to you and or offer advice. Come here often to learn, vent, and ask questions.

My DW and I are about 5 years into this, 2 1/2 since her diagnosis.  That first year was so hard for me, and her.  Anger, fear, denial, depression and on and on.  It was the beginning of my grieving for the loss of who my DW was, and for the loss of my life as I knew it. I know what you are going through.  

I also live in WI, a little town right on the border with the U.P. 


David J
Posted: Saturday, November 21, 2020 1:13 AM
Joined: 2/15/2020
Posts: 180


Hello CAtrope, 

Sorry you are here, but welcome. It is so scary when a doctor sits you down and says your LO has dementia. The PWD is usually in denial and we pick up the pieces. We here are all on the same road and can help each other along the way:  advice, companionship, sounding board, or just someone who understands. We’re here.

Dave


Crushed
Posted: Saturday, November 21, 2020 4:09 AM
Joined: 2/2/2014
Posts: 6105


I've been on this road 10 years.  Wonderful people here.  Can I suggest you fill in your profile with as much informaion as possible ?  ages kids etc. 
 

Joe C.
Posted: Saturday, November 21, 2020 5:54 AM
Joined: 10/13/2019
Posts: 478


CStrope, I am sorry you had to find us but welcome to the forum. There are a lot of great people here that are willing to listen and offer advice. I am not a medical expert but I am a little surprised that the MRI results stated finding dementia. My understanding is MRIs are generally used to rule out other cause of cognitive decline such as a brain tumor of evidence of a previous stroke and not as a diagnosis tool for dementia. I know that the neurologist that ordered my DWs MRI was very clear on this point and once he had the results further testing was required to reach a diagnosis. 

If you have not done so already you should speak with a Certified Elder Law Attorney ASAP and get your legal and financial house in order. Delaying doing so can have disastrous consequences down the road if it is determine that your spouse can not longer has the comprehension to sign legal documents. You really need some who specializes in Elder Law, not just the lawyer you used for other thing in the past. 

I also suggest you look on the AA home page and find a caregiver support group in your area. All the meetings these days are online Zoom meetings these days but they are a good place for finding what resources that might be available in your local area.


M1
Posted: Saturday, November 21, 2020 7:21 AM
Joined: 8/22/2020
Posts: 643


Hi again CStrope. Joe C. Makes a good point, dementia would not be a radiological finding.  "Significant early dementia" might more likely be the reason for doing the test; and the reason for the test is often listed on the reports. But the findings would be physical attributes of the brain, such as atrophy (shrinkage), tumor, normal appearance.

In any case, it is hard to see it in writing when it refers to your loved one. 


Beachfan
Posted: Saturday, November 21, 2020 9:21 AM
Joined: 2/1/2018
Posts: 592


Hi CStrope and welcome.  I, too, am sorry you have to be here.  You will get great advice here; nothing is off limits.  First and foremost, find a CELA (certified elder law attorney) and get all your legal, financial and medical affairs in order.  Do this sooner, rather than later.  As Joe indicated, waiting can lead to disastrous results.  Scour these message boards for topics of interest or advice on situations as they arise.  Above all, don’t go looking for trouble.  You will read horror stories of Alz patients and wandering, aggression, destruction, incontinence, hoarding, crying spells, hygiene issues, feeding issues, staying awake all hours of the night, etc., etc.  You may experience all, some, or none of these situations.  No sense worrying about what might happen.   

My DH was first diagnosed in May, 2010 with obvious symptoms several years before. We have experienced a slow, but steady progression to his present stage 6. It’s not the path I would have chosen, but it’s not the end of the world.  You can do what needs to be done.  One day at a time.  Good luck; stay in touch.  


jfkoc
Posted: Saturday, November 21, 2020 10:37 AM
Joined: 12/4/2011
Posts: 19283


Hi from me too.

Your first tasks are to get medical, legal and financial matters taken care of.

Medical..... you want a diagnosis based on current protocol. You want to know what is causing the dementia and which kind of dementia i.e. vascular, frontal temporal, lewy body. There is a lot online about diagnosis...here is one;

https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048075

Legal.....wills, trusts, health directives, Durable Power of Attorney.

Living in a rural area, you may need to travel to find medical and legal help. 

https://wai.wisc.edu/clinic-network/

https://www.elderlawcenterofwisconsin.com/

Your goal is to form a team of professionals and one that views you as an integral member.

We will always be here to support you and to share the very best information that we have. 


Lorita
Posted: Saturday, November 21, 2020 10:46 AM
Joined: 12/18/2011
Posts: 12524


Hi,

 I can't really add anything to all the above posts.  All of them contain really good advice.  I do want to add my welcome to the forum.  Many of us have been here for many years and all of us have been through what you're about to encounter or they're in the midst of it now.  I remember when I first joined - I was scared, too, and didn't know what to expect.  From the members here you'll find answers to any and all of your questions - don't hesitate to ask.

 You're stronger than you think and that strength will be called upon in the months and years to come.  Wonderful that you're able to work from home and be with him.  It's better for you and much better for him.  You've either now or will become his security blanket - a lot to have on your plate but you can handle it - and you'll know when you can't.    Again, welcome to the forum.


EdiBug
Posted: Saturday, November 21, 2020 11:54 AM
Joined: 12/28/2018
Posts: 25


I just wanted you to know that I understand completely what you are feeling right now.  My situation is similar to yours and I remember how overwhelming the beginning stages were for me.  That being said, your journey is your journey and no one else will have gone through it the same as you.  There is a lot to learn, a lot to prepare for and a lot of emotions to process through this season of your life.  Talking to people who have gone through something similar is a really good step to easing your mind.

The absolute first thing is to know what diagnosis you are dealing with. For us, it took about four years of convincing the doctor’s that my husband had something wrong before we were given an actual diagnosis of EOAD at the age of 52.  He had many mental exams, an MRI, extensive neurological testing and a PET scan before the doctor’s actually said Alzheimer s disease.  There are a number of different types of dementia so as the testing proceeds with your DH, you’ll hopefully be given a definitive diagnosis which will help you in determining the best steps to care for him.  Do lots of research and reading and ask lots of questions as the issues come up.  Once we had the diagnosis, we used the beginning stages by getting all our paperwork in order (just as Beachfan pointed out), we paid down all debt since we weren’t sure how long we had to deal with this illness or what the cost of care would look like for him and spent time just enjoying each other.  (In the end, he won’t remember the time together but that’s okay because you will be the keeper of your memories for the both of you.)

I am just one of many people who can say we know you can do it because we have done it.  The doctors originally told me to plan for my husband to live for 3-5 years but we are now about 15 years into our journey (my DH is now in late stage 7 of the disease.)  Your journey will be your journey and we will support you if you need help but it is also helpful to build a hands-on team (family, friend, church members, etc.) to help support you while you support your husband.

 Post here as you need and just remember to keep eating that elephant one bite at a time!


Jazzma
Posted: Saturday, November 21, 2020 12:43 PM
Joined: 12/19/2018
Posts: 7


Welcome CStrope.  I'm new here too -- my DH was diagnosed with likely Alzheimer's about three years ago.  His MRI showed an extremely small hippocampus (1% of normal) which was one consideration in the diagnosis.  He's in the middle stages of the disease and can still function fairly well.  All of the advice you're seen in the prior messages is important, to put you in the best position possible for now and the future.  I have found that there are 'milestones' that confirm the disease and make me very sad (when he could no longer read an analogue clock, when he could no longer write, etc) but that levels of function fluctuate.  Some days he's almost back to normal, others he is in a fog.  I have times of anger (how dare he leave me like this, why do I have to take all the financial and daily responsibility when I'm supposed to be able to retire?), fear (what if he winds up violent, wandering, etc) and extreme loneliness.  Overall, though, he is calm and we are able enjoy some simple things like taking a walk or ordering a pizza.  I wish you so much help and comfort.  Keep coming here.

 


mommom9
Posted: Saturday, November 21, 2020 2:35 PM
Joined: 5/24/2020
Posts: 94


Sorry this is a hard journey.  You can do it. I agree what the others have said. This is a great place to talk ask it just vent.
Cynbar
Posted: Saturday, November 21, 2020 5:55 PM
Joined: 2/29/2020
Posts: 362


You have gotten some wonderful advice already, and I agree with everything said. But I do have a couple things to add. First, you will find that most of the time, doctors will not give you much help or explanation. You may be referred to a neurologist or a geripsychiatrist along the way, and it's helpful to get the right diagnosis. There are some medications that are given to slow down the progression of the dementia, but those have variable reports on effectiveness. And you may need some medications along the way for anxiety, delusions or other behaviors. But beyond those things, most doctors don't give too much feedback or direction. You will get that here, from so many of us who are experiencing dementia here in the trenches.

Second, read everything you can here --- but remember that not everything will happen to your DH. Some patients are aggressive, combative, uncooperative, a danger to themselves by wandering, and so on ---- but many are not, or certainly not all of the above. Get educated, but don't get too discouraged.

Third, remember that old saying to hope for the best but plan for everything. You will feel a little more in control when your legal and financial planning are done. Talk to an elder law attorney and your financial planner (if you have one), get a good ideal what your financial options will be. You may well need to hire some private caregivers at some point to help you. And there may come a time when you consider placement, if he has difficult behaviors and/or your own health starts to break down. A lawyer will help you protect the maximum allowed assets in your state for your needs, and discuss Medicaid planning which may be needed in the future. None of this is saying that you need to make changes now, but it is comforting to have the information about Plan B and Plan C , even if not needed for several years.

Finally, I think all of us here started out scared, and overwhelmed, and wondering how we would survive. The good news is, we have --- lonelier and more tired and more battered than we were before this journey, but we're still here. I think you will be amazed at the strength and fortitude you find in yourself . I would never choose this for anyone else, but I have taken over areas of our life that my DH always handled, learned patience and humility, and often done things that my old self would never have imagined. My Dh is still home in late stage 6, can be argumentative but is not aggressive or combative, and is happy to be at home.  I hope to keep him here as long as I can, but if placement becomes necessary, I have a plan in place. It really is a one day at a time journey. Best of luck, and have a little faith in yourself.


CStrope
Posted: Saturday, November 21, 2020 9:08 PM
Joined: 11/19/2020
Posts: 64


Wow, a friend who's mother has Alzheimer's recommended I find others dealing with this through this forum site and I'm so glad I took her advice.  

Thank you so  much to each and every one of you that have offered your words of wisdom and encouragement.  I can't begin to tell you how much it means to me.

Tonight my DH looked out our front door and told me I should come see how bright the "big thing up there is "  (the moon).  That was a tough one for me to hear.  We live in the country so looking at the stars and the moon has always been a thing for us. 

For those that made comments about what the MRI said, again, thank you.  I think you're correct that the statement I read about dementia may have been listed as the reason for the MRI, not a result of it.  I was able to decipher that there were no vascular problems or any type of tumors, etc.  My husband comes from pure German heritage, so he's pretty stoic and not one to express his feelings or open up much.  But deep down, I think he's starting to realize he is having issues that are getting worse.  I've tried to encourage him to talk, but it's just not his nature, so I'll just let him be.  

Thank you again for all of your responses.  It is definitely helping me to grasp what I am going through.


Memphisdee
Posted: Sunday, November 22, 2020 8:05 AM
Joined: 7/22/2020
Posts: 33


Cstrope, 

my dh is also in beginning stages. Told by neurologist in July dementia without a memory test one. We’re seeing a gerontologist this week. He puthim on Namenda  but I’m not sure helping.  I think he’ll add aricept next apt.  He’s mostly self sufficient but frustrated by iPhone and iPad.   Seems like every week I noticed a little something that’s changed or different  He is still driving  

I’m so glad you are on here and hope you will zoom a support group with Alzheimer’s. It’s been so helpful to me  I do the Early Caregivers one on 3rd Friday out if Louisville  you probably have one closer to you  

I’m learning finances so you’re ahead of all of us on that. 

I’m going to friend you. Hang in there!

Dee


Tony484
Posted: Sunday, November 22, 2020 9:28 AM
Joined: 11/24/2017
Posts: 40


My situation is similar, living in rural Michigan. If by chance that the Mayo Clinic is covered by your insurance, that's probably the best route to a fast and more definitive diagnosis. Because they are a one stop shop, it's a way to avoid the interminable, extended period of appointments and tests and the travel from specialist to specialist within your state.  You can call their Neurology department directly to get in line for an appointment.  I'm not sure how true this is, but they seemed to be quite sensitive to the problems that people in rural areas face in getting a decent diagnosis and I suspect this may have had something to do with our ability to get in, though there was still a wait of 3 months (but it passed quickly). In two days, with the appointment coordinated by a nurse practitioner, they were able to definitively diagnose my DW's dementia as Alzheimer's.  I have since learned how much easier it is if you have a definite diagnosis because you know where to target your learning, planning etc.

In my experience, the first two years of knowing were the worst. It took me that long to stop focusing on what I was losing and to begin to appreciate what I still had.  Also, my experience has been that once the diagnosis was made and all the legal work (POA's, trust, wills, etc) was done, there was time to slow down and take stock. Other than the legal paperwork/planning it has been a very slow and long process of very gradual losses and learning to deal with them as they come along. This discussion board and a few Facebook groups have been the source of most of the useful information I now possess. I have at least 15 books on Alzheimer's, mostly unread. They are unread because you don't need to know everything at once, and IMHO too much of a focus on learning is not only depressing (and much of it will eventually not apply to your situation) but it also takes away from the time you have to enjoy the present. Alzheimer's, if that is what you are dealing with, is different for everyone, both in terms of the specific symptoms and the course of the disease and in terms of the personality and emotional make up of the caregiving spouse. Hang in there.  Your fear that you won't be able to handle it was -- and to some extent continues to be --- my greatest fear, but it has yet to turn out to be true.


Liz B
Posted: Monday, November 23, 2020 10:37 PM
Joined: 8/12/2020
Posts: 21


Hi CStrope. I am fairly new to the dementia of my DH as well, and taking over all KINDS of things I felt unprepared to do. But, guess what? I've done so many things (sometimes it felt like forensic accounting because he could not answer any of my WHY did you do this questions), and frankly it has empowered me - to know that I CAN do these things. I think one of my stress points was recognizing that ALLLL of the responsibilities were now mine, and that decisions had to be made, and by me - alone - now. This group gave me the courage to trust my instincts, seek professional help in legal and financial matters, get the important things in order, make sure to find caregiver resources and be kind to yourself, and not to rush to downsize, or move - we'll know when, or IF, its time. Welcome to a forum of very wise, compassionate people.

I wanted to suggest a book that a friend whose husband is in Stage 7 of Alzheimer's recommended. It's called Meet Me Where I am by Mary Ann Drummond. I found this book to be helpful for me when we have A Situation; her basic premise is that - when possible - instead of trying to bring your LO into YOUR world, see if going into THEIR world doesn't produce better results. I was absolutely not doing that. I have found that to be helpful in soothing his confusion, his frustration, his fear of the disease and then dealing with it in a way that might be more therapeutic and with a better outcome. 


ButterflyWings
Posted: Monday, November 23, 2020 11:23 PM
Joined: 12/11/2018
Posts: 336


CStrope - adding my welcome and encouragement to you. We are all in this together. Trying to survive our LOs' disease is job #1 is something I learned on these boards. Your title reminded me that earlier this year I posted about feeling so sad, as my DH had just failed to recognize me for the first time I knew of. It took my breath away. Now, just 10 months later, my perspective has changed so much with the ups and downs of AD. 

The day you posted this, he thought I was his cousin and then later his sister. I was truly just grateful these were people he liked, and we had a pretty good day with me getting lots of cooperation as the favorite relatives he saw me as. Sounds crazy, but this disease will change the caregiver in ways we can't even imagine and I am trying to take the good changes and not get too knocked down by the rest. My thought is that you have great skills at being the "go-to" person, which is an asset. Now it will help to put yourself at the top of the list of folks depending on you, if that makes sense. Our LOs will not survive dementia, but we can. Sometimes that means delegating A LOT, other times maybe finding a safe place and staff team to do the main caregiving so you can just be his wife again. All options are OK as long as you prioritize you, too. I have no doubt you will figure this out 1 day at a time, and we are here to help. Stay strong! 

Here are a couple of lifelines I got from this forum:  Here is a link to an excellent writing by Jennfer Ghent-Fuller,  "Understanding the Dementia Experience," it is a good piece to have and to share with family members:

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

The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at, (800) 272-3900.  if you call, ask to be transferred to a Care Consultant.  There is no fee for this service.  Consultants are highly educated Social Workers that specialize in dementia and family dynamics.  They are wonderful listeners, have much information, and can often help us with our problem solving. 


LUBY2883
Posted: Tuesday, November 24, 2020 2:23 AM
Joined: 8/2/2018
Posts: 6


My wife has been suffering Alzheimer's for, we think, 15 years. In 2017 she was diagnosed with moderate Alzheimer's Now the hospice nurse thinks maybe few weeks to end. My only advice to you is to seek palliative care through your local hospital or ask your family Dr. to help you with palliative care which is care given before Hospice care. The advice and help deciding what to do is so very  helpful. From DW's primary care to palliative, to hospice care has eliminated the panic when you don't know at what stage your LO is in and what to do at that point of late Alzheimer's. The professional care for little things with bathing, feeding, med distribution, and end of life suggestions lifted an enormous burden off my back so I could take breaks away from LO to take respite out doing for myself.

Taking care of yourself is your biggest responsibility. A sick or exhausted you is not going to be able to care for LO. 

If your  husband is a veteran, they fund Hospice care through the hospital or agency that provides it.

Now this is how caregiver services in my town worked. Your town may be different. I'm betting there is a solution. Especially in larger cities like Milwaukie or Green Bay. 

And lastly don't get discouraged and want to quit. There is also memory care if you can afford it. Medicare helps some through Medicaid or state health services. Take it one day at a time. Live in the moment. Yesterday is gone. Tomorrow is here sooner than you want it to be. Don't fret about them!

 

 


Ernie123
Posted: Tuesday, November 24, 2020 6:01 PM
Joined: 5/5/2019
Posts: 53


The many responses in this thread filled with such good advice underline the importance of reaching out and asking your questions and sharing your fears and sadness. You will come to rely on support to navigate the challenges that lie ahead. I cared for my DW of 52 years for seven years until her condition progressed to the point last December that it was necessary for her to move to a memory care unit. This eight year journey has been by far the most difficult period of my life. From all the good advice offered in the previous responses, I would echo Joe who suggested completing  legal POA’s and also reaching out to Alzheimer’s Society for support groups. For me, after family, the local Alzheimer’s Society has been my greatest support. I attended workshops about the disease and how it affects caregivers. Lots of practical advice and the reassurance of meeting people dealing with the same emotions and challenges. As your husband’s condition progresses you will need the advice of professionals if you are like me. It is hard to make decisions when you are stressed. For me the decision to move to care was one I could not make. My children, the Alzheimer’s counselor and my doctor all said the move was necessary for my relief as a caregiver and for a better environment for my DW. They have been proven right. A year later she is in a much better emotional state and enjoys the constant social activities in the residence. I visit daily, help her with personal care and leave knowing she is well cared for. 

If there is a day program offered for your husband, take advantage of it. He will probably say no at first, but persist. It will give you a few hours of respite and some social stimulation for your DH.

You will probably find out who your real friends are. Some people are just uncomfortable and may avoid seeing you or offering help. Others will be there for you and don’t be shy to ask for help. A friend taking your DH for a drive can give you some quiet alone time.

Lastly I predict you will surprise yourself with your ability to cope despite the fact  is a difficult, exhausting journey both physically and emotionally. Just live a day at a time and enjoy the moments of happiness that arise. The good and the bad are all mixed together it seems and I try not to focus on the bad.


CStrope
Posted: Tuesday, November 24, 2020 10:25 PM
Joined: 11/19/2020
Posts: 64


@Ernie123, I'm curious, you said your DW was diagnosed in 2017, but that they feel she's had AD for 15 years.  How did they decide that?  My kids and I talk about that a lot...wondering just how long my DH has been slipping.  He has always been one that was forgetful and a bit ADHD, so many of the things we now recognize as part of AD has been overlooked.
Ernie123
Posted: Wednesday, November 25, 2020 10:21 AM
Joined: 5/5/2019
Posts: 53


I think you mixed up my post with the one preceding mine. However, I can share how our diagnosis progressed. In 2012, after noticing my wife was easily confused and having short term memory issues, our family doctor gave her a standard memory test and her score was below what was normal. Of course a definitive diagnosis of Alzheimer’s is not possible. We did pursue a number of blood tests to eliminate other reasons for the changes and when no abnormal results emerged the logical conclusion was Alzheimer’s as she was showing classic symptoms of early stages. I would suggest you discuss the possibility of eliminating all other possible causes of memory loss and confusion before concluding it is indeed Alzheimer’s.

A further diagnosis occurred for my wife three years later. In 2015 she volunteered for a one year research study at Toronto Western Hospital which resulted in deep brain implants and electrical stimulation to determine if short term memory could be affected by stimulation. To qualify for the study she underwent extensive testing and interviews by several specialists who confirmed her diagnosis. Over the next year she was tested four times with varying levels of stimulation and indeed her short term memory appeared to improve at certain settings. The final results of the study are not yet published.

I would suggest you try to find a good geriatric psychiatrist to evaluate your husband. He or she would be the best resource for a clear diagnosis and advice on possible medications , the need for which will change as he progresses. This is especially important if anxiety, delusions or anger emerge as a result of the disease. These symptoms are most difficult for caregivers to deal with. While not every patient will develop these more difficult behaviors, it is important to have a relationship with a geriatric psychiatrist who knows your husband and can respond quickly and appropriately. My DW developed paranoid delusions a year ago. She did not recognize me occasionally and would scream at me and hit me and try to force me from our house. She thought she was living with her parents and I was an intruder. As these episodes worsened and increased in frequency her placement in care was necessary. I could not deal with it alone. In care, and with new medications prescribed by her geriatric psychiatrist, she has adjusted to her new “ cottage home “ staffed by wonderful caring people. She is now happy, calm and enjoys her life far more now than a year ago. I don’t relate this story to add to your fears or to ask for sympathy but rather to stress the need to plan and have supports in place. Plan for the worst, hope for the best. You need to think of yourself as well as your husband. Don’t hesitate to reach out for community supports, you cannot do this on your own.

This is a good resource about stages of the disease: https://tamcummings.com/download/84/


CStrope
Posted: Wednesday, November 25, 2020 4:10 PM
Joined: 11/19/2020
Posts: 64


So sorry for my mix up.  Thank you for the discussion of your DW progression with the disease.  We have a long appointment in mid January with a Geriatric Neurologist for extensive testing.  I'm guessing we'll definitely get more answers then.  18 Months ago, we did see a local geriatric physician, who at that time scored my DH and wanted to do an MRI.  At that time my husband was still managing quite well, and convinced me that the Dr. was off base and that there was nothing wrong with him.  Of course DH felt the cognitive tests he was given were stupid and meant nothing.  I was naive and believed him.

 @LUBY2883 your comment was interesting to me that you stated your LO was only fairly recently diagnosed  but that it is believed that they have had dementia for 15 years.  I guess I was asking because my kids and I have varying thoughts on when this actually started for us.

Thanks again for everyone's kind responses.  I find myself looking forward to getting on these message  boards to read people's posts.


anneleigh
Posted: Wednesday, November 25, 2020 4:46 PM
Joined: 1/24/2019
Posts: 264


CStroupe, I am so sorry that you are going through this.  Like many others the diagnosis takes us by surprise and we wonder why we had no clue our loved ones were going through this disease.  Glad you found our group as it is very helpful.
Wyoaviator
Posted: Wednesday, November 25, 2020 7:26 PM
Joined: 8/7/2020
Posts: 68


Ernie 123-

Thank you for the post. I had virtually the same thing happen to me.

My DW developed paranoid delusions a year ago. She did not recognize me occasionally and would scream at me and hit me and try to force me from our house. ... As these episodes worsened and increased in frequency her placement in care was necessary. I could not deal with it alone.

I. could. not. deal. with it. alone....... Such prophetic words. Thank you.

We are now faced with finding a new LTC facility since the previous one could not deal with her "behavior issues" which forced a trip to the Geropsych hospital. That determined that I am her behavior trigger. (She believes I am trying to murder her.) 

Since I am her trigger, I must make the decision about new LTC facility alone, with no input from her. I am glad your DW's situation resolved. Hearing that she is happier than she was  takes away some of the guilt, resentment, fear and anger I feel. 


Ernie123
Posted: Thursday, November 26, 2020 9:09 PM
Joined: 5/5/2019
Posts: 53


Wyoaviator believe me I sympathize with you. It is hard to explain to people who have not experienced it what it is like to have to deal with delusional paranoid behaviors day after day. A counselor at the Alzheimer’s Society told me that moving her to a memory unit where she would have lots of social interaction would be a real benefit to her. As you experienced, I was a trigger. And there was no one else in our house to help. I am blessed with a wonderful neighbor who works as a receptionist for a psychiatrist. When my wife would slip into one of her delusions I would phone my neighbor who would immediately come up. A short visit with small talk would bring my wife back to reality. Later my wife might say: why do you look upset? She would have no memory of screaming at me, hitting me, telling me to get out of her house!

My counselor said that social interaction and small talk is one of the last skills to disappear as the disease progresses. That is why it is better to make a placement into a memory care unit sooner than later. There is always a bit of social interaction and activities that are appealing. Also she can become familiar with the new surroundings as a safe place and not be triggered as easily. Paranoia did return last spring but a prescription of Olanzapine magically made it disappear. I visit her daily and I am so thankful to see her relaxed and happy. It is  very hard for me to adjust to living alone, the first few months especially were hard, but that I can handle. For sure now I can see the her placement was the best option for both of us.

I apologize for hijacking the original topic of this thread, but the value of this forum is allowing members to unload and share their experience in the hope it will help someone deal with their challenges.


CStrope
Posted: Saturday, November 28, 2020 7:31 AM
Joined: 11/19/2020
Posts: 64


Ernie123 don't feel like you were hijacking!  thanks for your insight.  I'm sure we all appreciate it.  

 


Army_Vet60
Posted: Saturday, November 28, 2020 9:35 AM
Joined: 6/21/2019
Posts: 867


CStrope,
  

      Hi, I'm sorry to read that you and your DH need to join this community.  Hopefully, you will get some answers to how to navigate being a Caregiver.

   

       I noticed other[posters have sent you some links to valuable information.

        I want to send you a link as well. The site lists the stages of Alzheimer's and what to expect as the disease progresses.  I got the impression you haven't gotten this information from the doctors treating your husband.

Alzheimer's Stages - Early, Middle, Late Dementia Symptoms | alz.org


Pimler
Posted: Sunday, November 29, 2020 7:33 AM
Joined: 11/29/2020
Posts: 1


Wow I know how you are feeling

My wife is beginning to show early signs of this horrible disease her mother passed from ,we cared for her till the end 

I'm having a really hard time with myself not sure if I'm up for dealing with this.

Of course I will do whatever it takes,but I feel very selfish about feeling this way 


CStrope
Posted: Sunday, November 29, 2020 10:44 AM
Joined: 11/19/2020
Posts: 64


@Pimler.  I completely get where you're coming from.  Like I originally said, I have always had to take care of so much in our marriage......finances, kids, cooking, cleaning, and for the most part all home maintenance and yard work.  Finding out I'm going to have even more responsibility put on me is hard to swallow. Then, like you, I felt guilty for thinking that.  Self care has always been extremely difficult for me, and now I just feel like nothing I need or want will matter unless I take care of it myself.  And then I feel like, why can't somebody worry about me just once.  Taking care of someone with this diagnosis is not going to be easy, but in the end I know I'll manage.

Hang in there.....


Crushed
Posted: Sunday, November 29, 2020 11:05 AM
Joined: 2/2/2014
Posts: 6105


DW was first diagnosed with MCI of the amnesiac type in 2010.  IMHO she was such a young (58) successful  and well known physician the neurologists were unwilling to make the Alzheimer's call until 2012. But I'm sure they knew.   Her position was administrative with no patient care .  By 2011 it was obvious she could not do her job. She organized her papers for the national library of medicine and went on terminal sick leave early in 2012. 

I was slow to find a therapist to help deal with the sadness and grief.    But it has been a life saver.