I NEED TO TALK TO SOMEONE

rauchy

Despite the relatively short time period dealing with my wife's problems and illness I am now realizing I have to give myself some care, a rest or just get some form of human contact that does not required an effort.

I have gone from being responsible for maintaining everything like the house, cars and landscaping to where I do all that plus handle all cooking, monitoring of medications, shopping for groceries, and playing hide and seek trying to find stuff put away in places nobody expects to find stuff. Every attempt to provide help, to get medical and professional help is met with resistance and I am watching my wife of 60 years in a race downhill. My stress level is almost to the moon.

It would be great to be able to spend a few hours engaged in any conversation about anything but dementia or Alzheimers. It would be nice if the distances prevent that to have a pen pal who is going through something similar and wants a break from reality. 

I live in Knoxville TN and my email for now is   [email protected]

That is not my real one but with so many nuts out there I will use it to receive legitimate emails and then switch to my real one.

This is a copy of a post on the caregiver's forum and it was suggested I post it here.

Jo C.

Hello rauchy; glad to see you made it over to the Spousal Forum.   It is the weekend, so it may take a few days for others to make it onto this new Thread.

I had responded to you on the Caregivers Forum and gave you the link to, "Understanding the Dementia Experience."  It is a good overview.

You sound overwhelmed and emotionally exhausted per your Profiile and your Post; I am truly sorry.  Being that you cannot get your wife to cooperate with care and assistance must be the most frustrating, and you do seem to really need some respite in the worst way.  I get it..

NOTE:  One thing your wife may well be experiencing is, "anosognosia."  This is common for many of our Loved Ones, (LOs).  This is a total lack of being able to understand that they have anything wrong with themselves whatsoever.

With anosognosia, it is not a willful thing; it simply just happens due to damage within the brain and the person is compensating for what their feelings are..  The person with anosognosia has no insight into the fact that they have dementia or other disability and often if told, they can really get quite angry.  One cannot argue with them or try to "educate" them to the facts; it will not be believed and will cause much ill will.

Here is a link re anosognosia:

https://www.agingcare.com/articles/anosognosia-dementia-patients-cant-recognize-impairment-210090.htm

Rather than arguing or trying to force cooperation, it may be that you will have to use fiblets to get her to care.  Perhaps the appointment is for you and she is going with you - clue the doctor in about this.  Whenever you go to the doctor or specialist, because we cannot talk about our LOs in front of them, a good way to deal with this so the physician has adequate information to conduct a credible exam, is to write a detailed but succinct memo to the doctor outlining all the changes in behavior, cognition and function and any other issues. What I did was to either fax this to the office a couple of working days prior to our appt. or get it in to the doctor's office another way.  I called the staff and let them know the memo was coming and was time sensitive to the appt.  date and to please get it on the doctor's desk asap. Then I followed up later that day to ensure that had been done.

I also carried a copy with me to the office appt.  I would excuse myself from my LOs presence saying I had to use the restroom.  I then spoke to the staff and asked them to please ask the doctor if he/she had read the memo.  If so, good. If not, I provided another copy to be read before the physician entered the exam room. It seems a lot I know; but in the earlier stages of dementia, we have to find creative ways to get things done in many of our cases.

Why not hire someone for a little help at home?  Perhaps this is a "new benefit" from Medicare.  Perhaps it is someone who has been out of work and she will be doing light housework in order to help her out if your wife has a compassionate bent..   You would need someone who is a good fit for your wife.  Once again; fiblets.

For my LO, I actually introduced the worker as a "friend," and invited her to coffee and cake to visit me and my LO.  The "friend" was clued in and then worked on being very outgoing and friendly to my LO who was very happy.  Next visit, the friend stayed with my LO while I went out on errands.  The friend became someone who came to visit my LO a few times a week leaving me free for that time.  They watched programs together, went for walks; did easy crafts, looked at pictures and magazines together, went to the beauty shop for my LO, and one day I even paid for them to go out to lunch - to my surprise it worked.

Anyway; you do need to format some way to get out and catch your breath whether you hire someone or a family member steps in to help a few hours a week or so.  Here on this Forum, there is an actual Thread written by Lorita, titled, "Just Need To Talk To My Friends."  On this Thread, dementia is not discussed.  It is about everyday things.  Gardening, cooking, Lortita's ranch with cattle that she handles single handedly even though she is not young anymore.  Ron is one of the fellows that is a caregiver for his wife who is not easy; he joins in and he is quite a cook and baker which his wife enjoys.

We call it Lorita's "Front Porch"  where we gather; the weather is always nice there no matter the season and as I say, the rocking chairs fit every size rear end.  Ha!

How far do we go with therapeutic fibs . . . . . well actually quite far in my instance.  My LO refused all doctor's appts, BUT she highly valued her BP meds.  So; I elicited the doctor's office staff assistance.  They called and asked for my LO.  They told her that the doctor was .no longer able to renew her prescription for the BP med because it had been such a long time since the doctor had seen her; it was the law.  They also just happened to have a few appts. available; would she like to come in so doctor could continue to prescribe the BP med?  Oh yes!!  In a slick second.  The staff also told her how much she had been missed and they were so looking forward to seeing her again.  Done!   I hate lying; but this was not a negative, it was a kindness that got her to care and kept her from major meltdowns.

You will get more input from others who may well have a different viewpoint; all input is good.  Keep coming by, let us know how you are, we truly do care and we will be thinking of you.   Don't know if you have caring adult children or other relatives nearby who could step in to assist now and then; if so, would that work I wonder . . . .

J.

rauchy

Thanks for the well thought out response. I am already doing some of  what you suggest although I am a type A personality and while I do inch forward, my progress to me is never enough.

It took 2 years to get me to have her visit our family doctor, The doctor and I had several deep discussions about the reluctance to return to the doctor, but when her prescriptions ran out and would not be renewed she had no choice. In the meantime the doctor and I were communicating via her personal email so the doctor was spring loaded to jump into action.

My wife got the MOCA test and scored a 14 which is well below the 26 to 30 range for people not suffering her medical issues. Unfortunately my wife resists further focused efforts but has gotten appropriate medications to help her. I have read extensively with the best book being Seven Steps to Managing Memory by Dr. Budson and Dr, O'Connor. The good news is the book is incredibly informative, the bad news is I now see her reluctance to get help and in fact resist help plus all she is doing wrong is making the disease progress, which of course drives my stress up to the moon.

I think I have decided I am not going to let her drag me down to her level. I will do what I can, when I can but I am going to work on how I can protect myself. I am very used to stressful situations having restored a number of bankrupt businesses, plus having started a number of business, but I had always had a pressure relief valve. I now have to find that way to release pressure and get some time to myself.

Back in the day I used flying as stress relief. Silly as it may sound to some, flying was where I could hone my skills and put them to work. After a flight in hard weather I was like a new man, completely relaxed because the concentration required took me away from the the business problems. I just have to find or create a similar release.

David J

Rauchy, I saw your post on the Caregivers forum but waited to respond until you reposted here. Stress is a killer and one of the things I had to deal with as DW got worse. She was the type A in our house but we both had stressful professional careers. She still experiences stress and anxiety, now I blame it on the disease. I blame my own stress and anxiety on the disease too. 

Having a paid caregiver come in two afternoons per week allows me to work on a hobby, go have a drink with a friend, do shopping by myself, and just be away for a few hours. It helps. My wife does not have anosagnosia and realizes she needs me to take care of her. Her fear that I won’t is a repeated source of her anxiety. I have no problems getting her to see doctors. As Jo said, you may have to fib to her or trick her into seeing doctors. What helped me was that DW was seeing a psychiatrist for years, and he is also the one who manages her medications. If there is a doctor your wife likes and will visit, you could enlist that doctor to help. Just a thought.

Jo really covered a lot in her response, but I just want to add as a husband to a PWD, that I get it. Our lives have changed and I have accepted that my role has expanded and it’s all up to me now. Knowing that I try to make sure I am physically, m metallurgy, and emotionally up to it. It takes for-thought, insight, and commitment. We are all here to help, as we have been helped by the community here. 

Iris L.

Welcome rauchy.  The book you referenced is not a book specific for caring for PWDs (persons with dementia).  Also, although there are tactics and treatments to prolong the early stages, the pathological disease process proceeds on its own.  It sounds as if you are blaming your DW for not doing more about having dementia.  Even if she were to be aware, her executive functions are gone.  She can't do much constructively.   There are many characteristics and behaviors common with the dementias that are not common with other diseases.  All relationships change with dementia.  It's no ones' fault. 

 Iris L.

rauchy

Iris, my hope after reading the book was my wife would read it and become less depressed and optimistic about seeking medical help, or doing some things to delay the progression of the disease.

Unfortunately she plants her feet and resists doing anything to help. I know better, but I cannot get past the feeling she does not care about the impact this has on me. I feel selfish when I think about it, so I am the one that has to change. Hard to do when I was always the one that always led the way, and others changed to follow me.

Jeff86

Raunchy,

Welcome to the forum and, as we always say, sorry you reason to be here.  Caring for a PWD is very stressful, and it’s critical that we as caregivers take care of ourselves—we’re no good to our LOs if we are out of commission.

We all experience the overwhelming burden about having to do everything as our LOs can no longer handle anything they used to do—there’s no more division of tasks between spouses as executive function disappears.  It feels crushing because it is.

As Jo mentions, your DW likely has anosonosia—she’s not deliberately obstinate, but incapable of recognizing her illness.  You’ll reduce your stress a little if you can recognize and accept that your DW’s lack of cooperation even in her own care is not necessarily intentional but part of the disease itself. 

You might do well to consider bringing in an aide to have some help with your DW’s care, and to give yourself a break from caregiving.  It’s an exhausting experience, physically, mentally and emotionally.  Time off on a recurring basis can relieve some stress and help refresh you for your caregiving responsibilities.

You rightly note that it is you who will have to change—your DW cannot.  Easier said than done, but your survival may depend on it!

 There are a lot of generous, wise people here who gladly share their experiences, techniques, emotions....this is a very caring community, so do let us know how you are faring.

rauchy

My wife is well aware she has issues, but she has always ignored problems wishing they would go away. In her mind her issues are supposed to be kept secret because to her it is a sign of weakness or as if she has something to be ashamed of. She knows it, I know it, the doctor knows it, but talking about it she acts like she is confessing a crime so we just pretend we are not aware of it..

As to an aide, the many times I have broached that for all the beneficial reasons, including to have someone for her to socialize with she is absolutely firm when she says "nobody is touching my stuff". She doesn't even want people on our property, much less in the house despite assurances an aide will just keep her company and not touch a dish or spoon or even get a glass of water.

I have learned if I push any issue, no matter how obvious, no matter how important no matter how simple she will retreat to the bed room and not reappear until she forgets why she went there in the first place. I hate to face it, but I know where this is headed and the only unknown is when. I will remain as caretaker until I cannot, at which point she is going to some form of assisted living, something she will fight tooth and nail.

Iris L.

rauchy wrote:

Unfortunately she plants her feet and resists doing anything to help. 

Raunchy, I want to respond to you but I will have to do it over several posts because I want to refer to your statements.

The above is the exact definition of anosognosia.  The PWD is UNAWARE of having dementia and will RESIST and become UPSET if you try to confront with reality.  

Someone may have posted a link to an article about anosognosia.  It's a good read.

You say your wife is aware, I have more to say in another post. 

 Iris

Iris L.

rauchy wrote:

 but I cannot get past the feeling she does not care about the impact this has on me. 

Rauchy, this is the loss of empathy.   Also a characteristic of the dementia.  It goes along with the anosognosia.  There are many threads regarding this.

I feel selfish when I think about it, so I am the one that has to change. 

Of course you do!  Nevertheless, the PWD's ability to change is limited to non-existant, so the family and others have to change or adapt or compensate.  I call this finding work-arounds.  The members have many work-around suggestions.

Hard to do when I was always the one that always led the way, and others changed to follow me.

Rauchy, and I write this with all sincerity, it will be as hard as you allow it to be for you.  You and your wife's worlds have turned upside-down.  Nothing will be the same.  You are on a sinking boat!  Grab the life-rings the members are able to share with you!  Make use of all the appropriate resources they suggest.  Read a lot.  Keep posting.  You have reached the absolute BEST dementia care support on the entire internet (IMO)!

Iris

Iris L.

rauchy wrote:

My wife is well aware she has issues, but she has always ignored problems wishing they would go away. 

Rauchy, obviously I don't know your wife.  But I do know that there is overlap between deep depression and dementia.  Seventy percent of PWDs have anosognosia, so they are not aware.  That means about thirty percent of PWDs are aware.  The general view of having dementia is that there is nothing that can be done about it, so why even bother?  This is from doctors.  This is what I heard from one of my own doctors.  A different doctor, a geriatrician, insisted that I accept that I had dementia.  I fell into a deep depression.  I posted about this on storycrafter's thread, which I believe is titled Befriending Grief.

As it turns out, I do not have Alzheimer's Disease.  But my cognition and neurological system is impaired.  Other members who posted on the I Have Alzheimer's board were aware of their diagnosis. How they dealt with their diagnosis varies.  

Whether your wife is dealing with anosognosia or deep depression, I cannot say.  Unfortunately, most professionals are unaware of the concept of anosognosia, so don't look to them to help you make a distinction.  Seek out a KNOWLEDGEABLE professional.  I suggest a conversation with a Care Consultant at the Helpline.  This is a social worker who specializes in dementia family dynamics.  

Also read lots of threads.  RELY on your fellow members.  They are in the boat with you!  There are many men here, too.

Iris

rauchy

When I was finally able to get my wife to the doctor, the doctor and I had already discussed her anosognisia. 

Whatever is impacting my wife's decisions and resistance to help and inability to grasp how she is harming her self and speeding the disease progress is unknown with respect to how to help her help herself. As of today we had another shift in responsibilities and I am not arguing or getting upset or revealing how it impacts me to her. It will be a waste of time..

Now instead of cooking all meals and my wife doing the dishes, I am now assuming that responsibility also. The hope is to never have to play hide and seek again looking for commonly used items that are no longer where they were for over 20 years.

She will continue to do laundry, and change the bedding as required and a cleaning lady who is her friend will come in to clean the house. But that is it and it saddens me to see her life slowly being reduced to sitting in her chair watching the birds on the feeder.

I am starting to have email conversations with folks in similar circumstances, and by trying to avoid ALZ topics every minute spent doing that is helping me.

dayn2nite2

rauchy wrote:

Iris, my hope after reading the book was my wife would read it and become less depressed and optimistic about seeking medical help, or doing some things to delay the progression of the disease.

Unfortunately she plants her feet and resists doing anything to help. I know better, but I cannot get past the feeling she does not care about the impact this has on me. I feel selfish when I think about it, so I am the one that has to change. Hard to do when I was always the one that always led the way, and others changed to follow me.

Why would she feel “optimistic” about having a terminal and irreversible disease?

She’s not changing because she CANNOT.

If that book has made you think her disease can be changed, please throw it away, because it sounds like bullsh-- to me.

Her behavior and the apathy is normal.  Can’t be improved.  Please read other information about dementia.

Jeff86

Raunchy, your posts would seem to indicate that you have either not yet learned or not accepted the likely course of your DW’s unfortunate AD journey.  She is not going to continue to do the laundry and make the bed—those skills and others will fall by the wayside, unfortunately.  Items will continue to disappear.  Your DW is incapable of engaging in activities and behaviors that are best for her well=being.  And, ultimately, every responsibility will fall on your shoulders. 

 

You are of course entirely right that it is profoundly saddening to observe your DW’s disease progression, the loss of functions, the loss of capabilities, the loss of interest in most everything.  You will learn about ambiguous loss, and about a long series of losses big and small.  And they’ll all hurt.

Sorry to say this but if your DW is calm and enjoys watching the birds at the feeder, you are one of the fortunate ones.  Read some more posts here—anger, aggression, violence, anxiety, apathy afflict many PWDs—this is a terrible disease that manifests itself in cruel and painful symptoms for both patient and caregiver.  The road is long and unpredictable but it only descends.  So, I concur with Iris.  It’s up to you to determine how hard this will be on you—the more you resist it and fight it and hold expectations that can’t be met, the more challenging you’ll find it.  I say this out of concern for you—I hope you read, learn, and adapt as best you can.  It’s a rotten hand you’ve been dealt; play it as well as you’re able to.

Stuck in the middle

rauchy wrote:

Iris, my hope after reading the book was my wife would read it and become less depressed and optimistic about seeking medical help, or doing some things to delay the progression of the disease.

Rauchy, your wife can't read a book.  If she's 14/30, she couldn't follow the story in an Archie comic.  My wife can't follow the plot in a mystery novel or a movie, and she is more functional than yours.

I don't know what you think she should do to slow the progression of her disease.  If you mean diet and exercise, they are good practices but aren't going to significantly affect the outcome.  AD isn't like coronary artery disease, where you can go to the gym, eat your veggies, and improve your condition.  

You are accustomed to fixing things.  Not happening this time.  Sorry.  Please try to forgive her for being ill, and yourself for being unable to change that.

storycrafter

Rauchy, it is so very hard, especially those initial changes that just turn your world upside-down. It's great that you are reaching out for support. Keep doing so because no one can make this journey alone. We all need support to navigate the very challenging and treacherous waters of this ocean.

We don't have to do it alone and it certainly does take outside help if we're to keep our own sanity. I'm talking anything from self-education, reading and researching, learning as much as you can about this complex condition, to hiring assistance with various things to help ease the way however you can.

Be patient with yourself as you work to get your mind and emotions around it. It's a huge change, huge loss, a gigantic adjustment and hugely creative on-going adaptation that takes it out of us. We can do it best when we allow others to help us through as they share their own experience, strength, and hope with us.

Stay with it, and you'll gradually find your feet again. (Personally, I still have bouts of "kicking and screaming," but I am surviving little by little and I'm learning to flow with the very strange and painful twists and turns, taking it a day at a time. Reaching out for support is the most important thing you can continue doing. Keep doing so until you find what you need. Stay open to what comes your way and learn to bend with the storm WITH the help of friends who are also acquainted with the journey. There are all too many of us out here.

I'll stop blathering, but want you to know you've got a lot of company and you aren't alone, though it may feel like it often. There's a major process of adjusting and learning, letting go and grieving that goes along with it all. This effort helps us get to acceptance and aids us in finding the resources we need for resilience and courage.

Hang in there. You can do it ... with a little help from your new friends. Keep coming back. Take what is helpful and leave the rest.

Jo C.

rauchy, you have received much input and care from the Members who are meeting you; we are all here in support of one another and that includes you too!

First rauchy; that book you cite and demand your wife read and follow was never, ever intended by the authors to be applied to a person with dementia.  Those two credible authors have another different book with six ways to deal with dementia . . . . that is their dementia input; not the one you have hinged your understanding and expectations on which has led to some of the negatives that you are experiencing that has led to misunderstanding and wishful thinking and seems to have very much contributed to the problems; some of them avoidable.

How many books have you read specifically regarding actual dementia/Alzheimer's Disease and care?  Alzheimer's Disease is simply one kind of dementia.  Also, do you have a dementia specialist as part of your wife's care team?  Our primary are MDs are awesome at so much, but they are not on the cutting edge of dementia dynamics and management.  Yes; your wife resists seing doctors, but with your own adjusting and acceptance and change in your own behaviors, expectations, approaches and especially communication, this and other issues will be challenges that can be met and dealt with and so much more. 

From what you have written about yourself; you say you are a "Type A" and it appears control has been very important and that you have been able to be in control as an important dynamic in your life. Though control appears important,  here you are with NO ability to control what is happening; that changes the entire universe of your life..  That has to internally feel very frightening and extremely threatening on multiple levels with no way to make it anything else but to experience what it is in reality. 

The next steps you take to expanding and educating yourself about dementia and gaining understanding of the realities and dynamics will decide whether you choose to be part of ongoing evolving solutions or whether you will continue to be part of your own problem.  It is really difficult and we here sure do understand that. It may be that seeing a counselor for yourself will be able to help relieve stress and help you work through the dynamics and reach acceptance.  Also, getting out of the house a couple of times a week or so will be helpful for you to regain some footing and give you a bit of respite with breathing space.   You deserve to gain ease of spirit and respite for the psyche and your body.

Your insistence that your wife will continue to do the laundry and change the sheets "as needed," is another one of those beliefs and possible control issues trying to hang on as long as you can that is not based in reality. That ability will be severely hampered and then lost.   It does not matter what your wife was like throughout her life prior to ever having dementia as you have pointed out; what matters is what is on the table now that neither she nor you have any control over.

That your wife does not recognize nor appreciate your stress, and all you do, etc., is also not a willful thing; what has happened is that her brain is damaged in the centers where empathy and sympathy are located; she is not capable of recognizing others feelings; again, not her fault.  This sadly is a very common dementia dynamic. 

The more you push and insist and even argue or scold, and try to force changes, etc., the worse the entire situation will be, the worse your own stress will be, and the worse the negative behaviors will be.  Your wife's brain, by this point has already been damaged and that will continue.  Sometimes changes happen slowly; other times there can be unexpected abrupt changes.  Each and every person with dementia has a different journey.  Your wife by this time,, even though she looks the same, no longer has the ability to use reason, logic or judgment as she had prior to the onset of dementia and that will eventually all be lost in  entirety; those abilities are no longer fully part of her capabilities and it will continue to have further negative impact.  She also can no longer fully process information and ideas as she did before; that too is compromised; it is all part of the ongoing damage to her brain.

She cannot help this; she cannot control it, she is NOT at fault, it is not a failing..  It simply is what it is; it is a disease. Your educating yourself and gaining understanding and also learning how to deal with the changes and communicate will lead to best outcomes which will hopefully help to relieve some or much of the negativity and even lessen the overwhelming stress you are feeling..

I had sent you the link to,"Understanding The Dementia Experience," by Jennifer Ghent-Fuller; others have liked the book, "The 36 Hour Day."  Learning how to communicate effectively to have best outcomes, and reading how to validate feelings rather than words will also go a long way in easing your situation.

Truly, I am so sorry for what is happening for both you and your wife and am hopeful that you will find your way - also truly; coming here to share and read is a huge positive. You will receive much understanding and caring support. We really and truly do care - at one time we were all new beginners who had to find our way and it isn't an easy process for most of us.  It was this place and the lovely people here who helped me though the worst of times and kept my head above water.

So glad you are here; please continue to share and let us know how you are.

J.

Davegrant

       As went on line today to view the alz site, I have been wondering in the last few days, if I am able to emotionally able to handle this caregiving role. So, when I saw the words “emotional” I was primed to read and hopefully learn something.

       I am in year four of this journey and it getting harder. My wife has this anosognosia so I am on this road alone. My emotions range from anger, confusion, and frustration. She complains constantly, she seems to not only resent my role as communicator to the family. She feels that if she had a cell phone then everything would be ok. She tells me the grandchildren tell her to get a cell phone. The truth is that she can’t operate a cell phone or any electronic devise. She stays up half the night tying to operate the desktop computer and the smart phone. I can usually clean it up in the morning. I bought a notebook which sits in the living room collecting dust. I took over the cooking but there is so many things she can’t eat. She is unable to chew many foods because her dentures are not sharp enough. We have a dental appointment on Thursday and this will be the second round of this journey to the dentist. Other problems with food is that its too sweet or too salty or too spicy.  So, that covers most things except soup, cereal and scramble eggs. We’ve tried meals on wheels and the problem there was taste and delivery time. Lately she has been hiding her purse and saying it was stolen. I’ve spend days looking around the house for a lost purse or lost money. She recently found some of my money and hid that. I had my money in a locked drawer but she found the key and re-hid the money except for some which I never found. I could go on about these confusing situations, it seems like she resists every solution and the harder I try to please her the more she complains and resists. I do have granddaughter who comes for four hours a week to visit with my DW but my DW  calls me asking when I will get back and what am I doing. Suspicion is one of her new primary characteristics so she will ask me many times who was at the library. 

I am trying hard to keep our life as is was for her but it doesn't seem to work. In some ways it is working for her but how do I deal with the frustration and emotions that add up. An analogy is when she stopped driving, I became her chauffer but she continued to tell me how to drive but I just ignored her due to safety concerns and drove as I thought I should. That seemed clear to me in regard to driving and maybe I just need to do that for everything else. 

 

CStrope

Rauchy, the hardest thing about watching our LO suffer through this horrible disease is to accept that they are no longer who they used to be.  Whether a business mogul, teacher, or factory worker, that person is in some ways gone.  That mild mannered spouse may now have angry outbursts, or that take charge partner now requires someone else for every decision. My DH was a high school science teacher for 30 years.  When the Dr. scheduled him for cognitive testing, the teacher in him emerged, and he was going to "study" and ace that test!  He purchased a workbook for 1st graders. I had to watch him struggle with every topic and every page, accepting the fact that he wasn't able to do any of it.  That was a low point in this process for me.  Watching him take almost 3 hours to put together a 24 piece puzzle, or choose a spoon to eat his salad with......these are all things that I had to get used to seeing.  I can't do the workbook for him, or help him with the puzzle, that won't change anything.  What I can do, is make him feel  like the things that he still does are great and the things he can no longer do are no big deal.  That's the world we now live in.

ElaineD

Dear rauchy,

The hardest thing for me  is understanding that DH DOES NOT CHOOSE his behavior or words.  What he is doing and saying are the result of brain damage.  

Yes, the words, accusations, behaviors are extraordinarily painful.  And the personal attacks can be devastating.

I cannot control the feelings of hurt, impatience, and fear I experience as my DH changes.  But I must control my words and actions as much as possible.

My DH went through one of the stages of dementia with a rather sudden personality change.  He was unbearably sarcastic, angry, mean and critical, and left me alone in the house most of the time (I'm severely disabled) and refused to take me to the gym, etc.  I thought it was somehow my fault, or at least that I was his target for a reason.

It wasn't until DH rather suddenly changed (after three years!) This was two years ago and now he is almost never angry, and he offers to help me!  

At the same time DH's memory problems, his 'conflation' of several events into one when talking, sleeping 12 hours a night, all of these are increasing steadily.   And he is very disorganized, I've noticed recently.

I don't know what the steps of his decline along the way will be, but I know this is going in only one direction.  

I find myself easily moved to tears, these days.  I think I am grieving all of the time.  My life partner (59 years) is leaving me alone to face this horrible experience.  

Elaine

abc123

Please read everything you can get your hands on about this disease. The 36 Hour Day is informative. The post here by people who are living with this nightmare are worth more than gold.

My mom was diagnosed about 7/8 years ago with alz. I knew she had it years before the diagnosis from dealing with a grandparent and my MIL. My dad has been reluctant to educate himself by reading and doing his own research. He would speak to her neurologist once or twice a year. In my opinion that was useless. You remind me of my dad with some of your comments. Especially when you said your DW doesn't want anyone in her house. So what! Do you let her make other important decisions with her damaged brain? My dad has let my mom ruin his life with her demands made with a damaged brain. For your own sake as well as hers, please start calling the shots. 

Jo C.

Hi rauchy, I just came across this - it is an excellent link with lots of detail on how to manage anger when caring for someone with dementia - well worth reading:

https://www.iona.org/manage-anger-caring-dementia/

Thinking of you,

J.