Feelings of denial and not dealing with the future's hard realities

Scargo

My first post.
My wife has early-mid stage 3 as far as I can determine. She/we have been in an AD clinical trial for eight months. She still does an acceptable job of caring for herself.
I've been reading some of your posts and many are depressing and hard to read. I have been seeing a psychologist who specializes in AD caregivers. I have seen a psychiatrist for the first time in my 75 years and have started an antidepressant.
This is hard for me to deal with. I take good care of my wife, but me preparing for our future is not moving along very fast. It's hard to be motivated and I'm usually a very active and motivated person. I feel like I'm in denial, not accepting where we are and resisting doing the hard work. I'm so used to taking care of almost everything, but this is so much to deal with, and so far I don't know how to allow others to help and take over some responsibilities. She also resists anyone caring for her besides me.
Right now it's not horrible, but the stress of all I feel like I have to do is pulling me down. It feels so overwhelming now... and then I read about how bad it can get. Right now she is gentle and loving and there are vestiges of normalcy.
I guess I'm here because I'm struggling and don't know what to do next or how to summon up the energy to do what I know needs done. My therapist suggested I join this group.

Old89

I cannot offer much help except to say that your post could have been written by me in every particular except that I am now 3 years post my wife's diagnosis.   

It is just very hard.  In addition to anti depressants and therapy, I have been doing meditation, participating in support groups and reading books about dementia caregiving.

For me I really need to push the issue of having some respite care.  We have no family and my wife resists outsiders, but if I do not have some vestige of an life other than 24x7 watching over her, I don't think I can make it and be healthy myself.

There is another post in this forum that I think you can find by searching 'books" or using my screen name that lists books and support groups I have found helpful and I wish you all the strength you will need through this journey.

I also find the future scary but need to negotiate the present first.

Take care.

RobertsBrown

Hi Scargo.

Reading your post it occurs to me to point out that depression and anxiety and concern are all perfectly normal reactions of a healthy brain to the situation you find yourself in.

For me, this experience is literally 'one day at a time', and I am often amazed at the things I do now that seemed impossible to either do or tolerate a short time ago.  We humans are tough and adaptable. There are good and bad days, and I often look for answers outside myself.  This forum is one of those places, but the truth, for me, is that there are no external answers.  For me, it comes down to taking a breath, telling myself "I can do this" and then getting on with it.  I often fail.  I also win from time to time, and get a good minute, or moment, or hour, or day.

A friend once suggested to me that my life might not be about me.  After I got over laughing at the absurdity of the suggestion, I had to consider the possibility.  I have come to embrace the idea, and in fact I now agree completely that my life is not about me. Goals have changed, what used to be important is not so much, and i try to take the long view. Truly, taking care of my spouse either in person or with help from others is no waste of a life.  It's just not the path I expected.

I hope this group can help on those days when you need some assurance that you are not the only person with these burdens.  It has certainly helped me.

Jo C.

Hello Scargo and a very warm welcome to you.   When we first hear the diagnosis of our Loved One (LO) having dementia, it can be a stunning blow and even difficult to process.  The very earth seems to be moving under our feet and life as we know it and plans for the future suddenly take a sideways slide to somewhere else, but we are not sure where that somewhere else is going to be.  This uncertainty and difficulty processing seems to be part of the process for many of us; in the beginning we are all flying by the seat of our pants until we get ourselves centered.  Kind of like treading water for awhile.  Trust in that you will be able to find that center for yourself soon. Sometimes, one step at a time.   We are all here in support of one another and that now includes you too.

It is important to remember that every single person with dementia is different from the next.  There is a saying here; "When you see one person with dementia, well; you have seen one person with dementia."  By its very nature, a supportive Message Board and Forums such as this will see every sort of dynamic, but it will often have many more whose LOs have serious problem issues; that is why they come here - for advice and support.  NOTE:  Not every person with dementia will have such a severe time of it, nor will all persons with dementia have the same symptoms, or behavioral issues or losses, or pathways, etc.   Some will have a much easier time and they will be able to function well for a longer period. 

You are wise in seeing a therapist and getting help in working though this.  Logically we know we will somehow manage things that need care; but emotionally we can be at odds as we work through so much adjustment .  Logic and emotion live on different planes of existence.  

There are quite a few men and women here on this Forum who are caring for their wives and husbands or SOs and they are all really supportive and have much good input to share.  You will soon meet them on a personal basis and they are terrific.

Starting with one step at a time:  On the practical side of things; (you may already have done so), it is best to seek the advice of an Elder Law Attorney to ensure that all your protective paperwork is done and you are protected for the here and now as well as for future needs.  If not done yet, it should be done asap while your wife is still able to sign her name to papers.  This will give you a start and get a framework put around things.

It is also best by far to have a dementia specialist as part of your wife's healthcare team.  Our primary care MDs are awesome at so much, but they are not on the cutting edge of dementia and that can make a difference. We learn that the best environment for our LO is one of structure and routine. That is important and helps keep things on a more even keel.

As for getting your wife to accept help; so did my LO.  What I had to do was to use a "therapuetic fiblet," (very good tool in the caregiver's toolbox by the way); I found a lovely person at church who had been companion to the elderly; I arranged for her to come as a "visitor" for coffee and cake.  She arrived and my LO was fine with the idea she was a "friend."  We kept things social.  I did that a second time a week later but during that visit, I absented myself from the table to go and do a chore - the companion then spent time "grooming" my LO and being very sweet and engaging.  A day later, the companion called and asked to speak to my LO - (all planned.)  She talked with my LO and then asked if she could come by and visit.  When the "visit" took place, I left to get some groceries.  Well . .  it took off just beautifully.  The woman engaged my LO with talking, watching TV, going to get hair done, fixing a little lunch, a bit of crafts, going for a short walk and even going to lunch (I paid.)  Soon, all was in a good routine and direct care ensued.  Fiblets are not a moral lapse; they are a kindness for our LOs as necessary and keeps meltdowns from happening.

Some folks have had their LOs attend an Adult Daycare for x amount of hours per day for x numbers of days per week; whatever works.  Fiblet:  The Daycare has the LO "working" as a volunteer and helping with small things or other people.  Interesting how much that can help; increased socialization is often something that seems to adjust our LOs attitudes and restfulness.

You will get much more and better input from other Members over the next few days or so; in closing I want to let you know that the Alzheimer's Assn. has a 24 Hour Helpline, 365 days a year that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are wonderful support for the caregiver, have much information and can often assist us with our problem solving.

I am so glad you found this supportive place and know that we will be thinking of you and we truly do care.

J.

Jo C.

Scargo; there is a wonderful writing by a dementia specialist that is highly recommended and highly respected, it is about 25 or 30 pages long and can be found free of charge online - it is the absolute best for explaining dementia in detail and why our Loved Ones change or may act the way they do.

I would place a direct hyperlink here, but when I do, it runs over the borders and onto the wide screen.

Google "Understanding The Dementia Experience," by Jennifer Ghent-Fuller.  When doing the search, put in:  pdf. 

It is good to print off for future reference and also is a great writing for relatives to bring knowledge to them too.

J.

Doityourselfer

Scargo,

Being a caregiver to a spouse with dementia is a tough job.  You have come to the right place for a lot of support and information.  In my experience, the earliest stages of AD were difficult to deal with because my husband could mostly take care of himself but I was resisting the fact that he was losing the ability to do certain things.    It's a huge adjustment to take care of another as well as yourself, but things seem to fall into place especially when you can keep a routine.

I wish you the best in your caregiving journey.

Ed1937

Scargo, welcome to the forum. You have found a good place to get help and understanding. Sorry you have to be here.

This is a long, rough road we're all on, and we've all had thoughts like yours. But the good news is that you will learn to deal with it, and hopefully get to the point where you accept what is happening. When you accept it, that will make it a little easier for you. 

So read a lot of posts here, and reply to others when you want. Also check out youtube for videos by "Dementia Careblazers" and "Teepa Snow". Both are very good, and can give you information that will help you get through this.

SSHarkey

Welcome Scargo! We can all relate to your post! Everyone of us has dealt with the initial shock of this terrible disease. Keep in mind you are grieving. People have called Alzheimer’s “the long goodbye”. Unlike loosing a LO to a traumatic accident, we watch the person we knew slowly disappear. You are wise to seek counseling and plan for the future. Especially the legal aspects before things get more difficult. For me, I’ve had to force myself to create a life for myself separate from my caregiving. Coffee with a friend, going to the gym, even something as simple as going to the store alone. You must take care of yourself, or you’ll be no good in the long haul. You’ve been given some excellent advice from everyone. Take it to heart. We’re all in this together! When you’re overwhelmed, avoid reading the posts that are too much for you. You will learn a lot here. This site has given me a place to feel empowered, to know I’m not the only one feeling the way I do, to know that if I don’t know something, someone else might. Stick with us! And God’s blessings over you both! Suzi

Crushed

Dear ScargoWELCOME

I'm 70 and Ive already been on this road for 11 years.  We are here for you . 

Only the people here really understand.  Lots of nice folks here.  

Crushed

Jo C. wrote:

Google "Understanding The Dementia Experience," by Jennifer Ghent-Fuller.  When doing the search, put in:  pdf. 

It is good to print off for future reference and also is a great writing for relatives to bring knowledge to them too.

J.

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

Gig Harbor

Hi Scargo, 

Welcome to the club! My husband is 83 and physically is very healthy but has zero short term memory and is unable to learn and remember new routines. He is fast losing long term memories as well. When he stopped being able to do his 2 hour daily walk alone due to getting lost I knew I had to get time alone each week. I advertised on a local FB job site for a caregiver to walk with him three times a week. Two lovely ladies replied ( actually about 15 people responder) and I hired one for Monday and the other for Wednesday and Friday. They come from 11-3. I told my husband that we had been approached by the local hospital to participate in a training program for women who had been out of the workforce but needed to start working again. I asked him if he would be a trainer and that the hospital would pay the ladies. It worked like a charm and three months later he loves his time with them. They make lunch, walk, discuss and listen to music and basically pay him lots of attention. They both offered to do housework but I said I would rather they focus on making his life better. I pay them cash at the end of every day and it is a win-win for both of us. I don’t know what I would do without my free time although some days I wish he were the one leaving and I could stay home. Day care will likely be an option in the future. He watches a lot of TV and that is OK. He forgets a show the minute it is over but he also forgets any activity we do so TV allows me to do lots of other things around the house. He likes to fold laundry and sometimes I “create” another basket of laundry. Years ago he started having nightmares where he would throw his arms and legs around. These did not happen every night but they interrupted my sleep enough that the dog and I moved to the guest room. He settled into having the big bed to himself and actually sleeps much better because I am not waking him up to tell him to stop snoring. Eventually this might not work but for now we both sleep,well. You will find that you have to constantly adjust routines as they start to forget more things. You will get frustrated and sometimes show it. That is OK because you are a normal human being. To stay healthy and survive this you cannot be unhappy all the time in a quest to make her happy 100% of the time. If she is bored, sad or just miserable some of the time it is just life. We all have days like that and we have had them through out our life. Good luck and hang in there. I would also suggest joining or forming your own support group. That can be an immense help.

David J

Hello and welcome, Scargo. I’ve read through the entire thread and you have been given huge amounts of good advice. I’ll add/emphasize that every path through dementia is different. Don’t get hung up on the troubles that caregivers face. I have been on this road for many years, but some paths have been much shorter. You just don’t know how long things will be as they are or when changes will occur. I learned to enjoy the good times and try to soften the bad times.  Find enjoyment with your LO when you can. 

For me, this has been an opportunity to love and care for my wife in ways that are very rewarding.  My wife was extremely independent and competent, but now needs me and needs my help. I have found a new kind of love, giving and not needing anything in return. I guess caring for her has become my most important and rewarding job. I hope you can find your peace with what is happening to your LO and you. 

Paris20

Scargo, I’m glad you found us. My husband was diagnosed in 2015 and here’s what I’ve learned. After a stint in the hospital, I learned the hard way to take care of myself and get help. I try the best I can to take care of my husband, read and learn about dementia, and literally take each day as it comes. For the first time in my life I take an antidepressant. I had counseling too.

My husband has Alzheimer’s Disease (AD in these forums) and I never know who or what behavior I’ll be seeing each day. It’s important to learn that the old ways of talking and reasoning with your spouse will not work as the condition worsens. What we call «fiblets» really work. They’re little lies that calm the person with AD and get us through those soon-to-be-forgotten moments. Most important is that you should not beat yourself up if you don’t reach perfection in this journey. There is no such thing. We’re human. We’ll screw up, lose our temper, cry, laugh, and feel exhausted sometimes. We’ll make mistakes but learn from them. We’ll become angry more than we want to but, coming here, we’ll get much-needed information and support.

Jeff86

One more welcome to the forum, and my sympathies that you have reason to be here.  The wealth of knowledge and experience, the generosity of fellow caregivers, and the ready understanding you will find here are unparalleled.  

You will read about an enormous range of experiences here.  You’ll read of heartbreaks and joys, trials and errors, anger and frustration and relief.  As you read, it’s important to remember that everyone’s AD journey is unique, and many things you learn and read about, while frightening, will not happen to your DW and you.  

You do well to look after your own needs, psychological, emotional, and physical.  You need to build your support systems for this arduous and unstoppable journey.  We all are here for you, as we are here for one another.  

Joydean

Scargo, I can only tell you all these wonderful people on here have helped me more than all the books I have read. These people are real they have been on this road much longer than I. And yes sometimes reading scares the crap out of me, and yes I have cried, and best of all, laughed! Without these people I honestly don’t know how I would be surviving. For me, I come to this  

“House “ for peace, then I pray a lot! Not just for my DH (dear husband), myself, but for all my new very best friends!  

This is a journey no one ever wants to be on.  Ps I’m almost 75 and my husband is almost 76. He was diagnosed almost 2 years ago. 

RobertsBrown

Hey Jo C.,

 This:

  Google "Understanding The Dementia Experience," by Jennifer Ghent-Fuller.  When doing the search, put in:  pdf. 

 

is AWESOME.  Thank you x10.

  

michiganpat

I am new to site also. I wrote out a long message (my first one) but when I tried to post I got an error message. Very disheartening as I also lost what I wrote and needed to start over. I will try this route. Your post could have been written by me. I would put my husband at stage 4. I am having a difficult time accepting what I am seeing. He has good days mixed in and I start to question myself. I know in my head what is happening but my heart won’t accept it. I read other posts and see so much of us in them. You and I and so many others are at the beginning of a long difficult journey. I will try a new post again as this group could be lifeline for me as well as you. I wish you peace and strength for the future.

abc123

Welcome. I'm sorry you have to be here. You mentioned something about having or accepting help. Bringing in help sooner, rather than waiting until it's past due will be a huge blessing to you both! Even if you start with a couple hours once a week. The sooner the PWD gets used to other people in the house the better, for both of you. There are many threads here about work arounds to get the PWD to accept a new person in the house. Please don't wait. My dad waited much too long. The stress of trying to live his life like nothing was wrong with my mom and being her full time caregiver has pretty much done him in. My biggest fear has come to pass. I have lost both parents to Alzheimer's disease. My mom thru no fault of her own, my dad because he was stubborn and careless with his own well being. Please don't do that to yourself and the people who love you.

Jo C.

Hello Scargo; I am thinking of you.  How are you doing?

J.

Scargo

I see that there's many more posts since I was last on. The first few really affected me and almost brought me to tears! I was really impressed with the initial response!
All of you are incredibly understanding and helpful and I couldn't have asked for better responses to my post!
I will try to get them all read and respond to some of them. Life gets in the way in unexpected ways with an ADLO (I'm trying to learn the acronyms). My wife and I have just had a set-to with the American Express account. She is charging stuff she shouldn't and changed the password at some point. We finally got through it, with the representative being very understanding, as well. Now, I have full control of the account, but she still has her privileges. She has not gone off the deep end yet. But, I feel this task is indicative of what's to come, with her not understanding why I'm fixing passwords and fooling with her laptop. My touching her laptop is very upsetting to her.
This is like many things, where her being in the room, within earshot, while I try and take care of personal and financial matters, causes her upset and creates many questions that I cannot find words to answer. I found myself scrambling to find a list I had seen of how to best respond to people with AD, but could not find it in time. I became frustrated, raised my voice and went through a difficult period of trying to be calm and nice to her. I just don't have a lot of this down yet and I know it's only going to get more difficult.
One of the reasons I was attracted to my wife was her feistiness, independence and strength of character. It's coming back at me now, at times. I perceive that she hates this handicap of mental decline and reliance on me and being left out of the loop. This perception I have is not her feeling if we discuss it. It is this crazymaking of my perceptions vs reality vs her reality in the moment that I'm trying to understand, and yet, not let myself get sucked into.

Scargo

abc123 and all,
I'm told that many caregivers do not outlast their SO with AD. I know I'm very stressed at times.  I practice relaxation and I go to the gym every other day. I try and see my friends or communicate with them. Many don't get it, so I guess that's part of why I'm here.
My Achilles heel may be my drinking. I'm hoping the antidepressants, counselling and education about how to deal with all of this will help. I'm a bit of a perfectionist and don't like to look like I'm failing or doing a lousy job of this. I feel like I'm having to learn how to live and love all over.

jfkoc

There is a fine line between getting sicked in and simply accepting that your wifes reality is not yours and that hers is just as real to her as yours is to you.

Scargo

RobertsBrown, Perhaps I relate to your post the most (so far... there are so many amazing comments) You said:

"I have come to embrace the idea, and in fact I now agree completely that my life is not about me. Goals have changed, what used to be important is not so much, and i try to take the long view. Truly, taking care of my spouse either in person or with help from others is no waste of a life.  It's just not the path I expected."

This certainly isn't what I expected either. I've led a fairly carefree life. I worked hard and played hard. I never thought I'd get to 75... I met my wife at 55 and a few years ago we decided to get married after being together for sixteen years. Turns out, it was just before I started noticing a memory decline. It took me several years to convince her psychiatrist that she had more than normal aging memory loss.
I may have to give up my car racing hobby and many other things. I was beginning to question the importance of some of these things anyway. She is worth it. Best damned woman I've ever known. She has a big and generous heart. Now, I have to carry the torch and think of others more than myself. 
Thank you for sharing.

sandwichone123

Scargo, I just wanted to address this part: "I just don't have a lot of this down yet and I know it's only going to get more difficult."

I want to say it may not get more difficult. As your skills improve and you are able to see a bigger picture you may find that, although your wife's condition continues to deteriorate, your ability to cope with it improves, as does your ability to care for yourself. At that point it becomes easier.

Buggsroo

Hi Scargo,

My husband has had dementia for about two and a half years. It has been a trip. I am not surprised you feel angry, scared, overwhelmed etc. I have felt and still feel these emotions.

My husband has lost his wicked sense of humour, this is a huge loss for me, he really was hilarious. Now he is like a sweet little boy who turns mean and cutting. After saying something really cruel, he will tell me he loves me. Emotional whiplash.

What I want to say to you is that your wife having dementia will probably be different than some of the people here. I used to believe that dementias were the same; they’re not. You will become accustomed to dealing with the ups and downs and handling each crisis as it comes. Keep reading the entries, they have helped me a lot. 

You will lose patience, cry, mourn etc, as we all do. I wish you the best possible outcome. 

Paris20

Scargo, I just want to add one more piece of information, not easy for me to post but important to mention, in regard to your Achilles heel, worry about drinking too much. It happened to me. I was alone with my husband, no help, under Covid quarantine. That casual evening glass of wine started to double exponentially. I escaped my husband’s rants and loony remarks by putting myself into a slightly hazy fog that got me through the moment.

I got sick, very sick. I was hospitalized because of what happened to my already fragile digestive tract. That was last winter. It scared me. I got all the help that was recommended. I have not had anything to drink, except water or Diet Coke, in almost a year. I feel much better able to be a caregiver. I finally gave in and got help at home. My husband is worse but I am better.

If anyone fears that any kind of substance abuse is becoming a harmful means of escape, don’t wait for an emergency, the way I did. In my over-70 years of life, I didn’t have a problem with alcohol, yet it happened. The crazy circumstances that Covid isolation and dementia at home created could have killed me. We caregivers often postpone self-care…doctor or dentist appointments, eating well, working out, etc. Don’t do it!

Stuck in the middle

Scargo wrote:

... and then I read about how bad it can get. Right now she is gentle and loving and there are vestiges of normalcy.
I guess I'm here because I'm struggling and don't know what to do next or how to summon up the energy to do what I know needs done. My therapist suggested I join this group.

"Right now" can last for years.  My wife is gradually losing memory and executive function, but her "good night" typically takes the form of "I love you" or "Thank you for taking good care of me."  It makes it a lot easier to be the one adult in the household.  Some caretakers report horrible experiences, but some of us don't.

In your place, I would make a "to do" list and work at it like a job.  And I have discontinued the alcohol.  I love whiskey, but it does not love me back, and I don't have a designated driver anymore.

[Deleted User]

The user and all related content has been deleted.

Crushed

All good Advice from Victoria

I just thought you needed a cheery snowman

  
 

Cherjer

Do  you have an email that I can get in touch with  you privatetly?

10s player

Wow, thanks for the message of acceptance and courage. One day at a time is how I'm taking it right now. My husband has not been diagnosed . He is scheduled for a neuro/psych exam is March! Long time  to wait but I'm  not sure what difference it will make. He is changing  gradually , memory and speech are different and his personality has changed. He is quiet so much now and little desire for physical activity. I' msad to lose the person I know and love but I'm grateful that I still have "him".