I'm new here and I want out...: (

miaR

DH diagnosed one month ago and our lives are out of control. I am the caregiver, now only driver, home caretaker, as well as the target of his anger, rage, distrust, you name it. Not sure what to do, where to start. I dont even know this person really...and I now realize thats been going on for years. Here I thought we were just having adjustment to retirement issues, I filled my time with travel books and thoughts. Little did I know the bear in the room was Alzheimers stage 4. What does that even mean? He accuses me of tricking him to see the neurologist and getting the diagnosis. Quote, "I didn't tell him before we went to see the doctor". We had to wait 6 months to get in to see the doctor, then tests done, MRI and blood work. One more month to hear the news...In all of this I am the bad guy. In reality I'm trying to save his life! Even tho I am giving as best care that I can there are days that I just want to quit...thanks for listening, I'm sure someone out there can relate. 💔

WIGO23

I hear you. My DH was diagnosed with ALZ last April. This is so very hard. We dance the dance everyday—he says something that is factually wrong—-I smile and think WHAT?? He forgets what he asked two minutes ago. I smile and answer his question again. I set right the mistakes of the moment, out of his sight so he doesn’t know he made them.

i worry what will come. Can I do this? Am I strong enough? Am I healthy enough, both emotionally and physically?

Each day I try to stay focused and positive but each day his world and mine seems smaller somehow.

M1

Welcome to the forum Mia. We can all relate to your post and i am so sorry. Someone will post a link to tam Cummings stages of dementia, unfortunately they were recently removed from the website. Stages can overlap, though. Many in stage 4 have lots of rage as their deficits worsen, and we spouses are the safe target when our loved ones don't understand what's happening to them. Reminding them the dementia diagnosis doesn't help. Many have anosognosia and cannot even see that anything is wrong. Medications may help with the anger and aggression, but geriatric psychiatrists may be more helpful at this than neurologists ( to get him to go, you can tell him it's for a second opinion and don't say it's a psychiatrist).

You talk about where to start: number one priority is legal legwork, you need to have power of attorney for healthcare and finances and these need to be signed while he still can. Your own papers should be updated as he cannot serve in any capacity for you. A certified elder law attorney can help with all of these and can advise you about financial planning. You need to think about how you would finance memory care, and that may include qualifying for Long-term Medicaid for many.

Don't give up on the travel books yet. This is also time to consider your bucket list. My partner and I took a very enjoyable 25th anniversary trip to the North Rim of the Grand Canyon when she was stage 4,and also attended her 60th high school reunion a few,weeks later. Those are very precious memories for me now, as she is now stage 6 and in memory care for 20 months.

This forum is a lifeline. Hope it helps. You are not alone.

trottingalong

I have been where you are. All of us have different issues depending on the personality of our loved one. My DH and I used to bicker and argue and he would accuse me of saying things I never did. More than one person on this site explained that’s how his brain works and that’s what he believes. I have learned over time to agree that I may have done something, or it may have been me that misplaced something. It was tough, but diffusing the situation at the time can help you ultimately. When we have left a doctors office and he is confused or angry, I let him vent and then just agree that doctors don’t know everything. Because his short term memory is suffering more and more, he doesn’t remember some of these conversations. I know it’s not easy. Two years ago I was at my wits end. Some days I still am, but most days are ok. My DH does recognize he’s not comprehending or remembering things. We actually can laugh about it sometimes. Keep reading what others write on this site. I have learned a lot.

Jo C.

Hello Mia and a very warm welcome you. What you are facing is something most of us have experienced, so we understand. I learned very early to never, ever mention the words "dementia" or "alzheimer's." Guaranteed to cause upset and agitation of course directed at the person doing the most for them. Agreeing with his false beliefs is alright; it calms him and does not further the upsets.

You are on the first rungs of the learning ladder and you will soon be getting things in better understandable order. My failing, before I understood better, was to argue, or point out the facts and not let false beliefs stand which of course made things far worse; but I was flying by the seat of my pants in full confusion myself because I was new and did not know.

Soon learned NEVER to argue or point out inaccuracies; just use fiblets and agree with whatever belief is present; if it is about unfaithfulness; then one states that "I would never leave you; we are a team together and I will always be here for you . . " and then refocus onto another topic asap.

Read, read and then read some more re dementia. Though your spouse looks the same and much of the time may sound the same; his brain is "broken." He no longer processes things with a normal brain. His judgment, logic, ability to even understand consequences has been damaged and this will not improve. He feels and will lash out in the feeling of the moment; filters are damaged, so he will move forward his feelings right or skewed.

If he is getting highly agitated and being delusion driven to the point of affecting quality of liife, the dementia specialist can prescribe medication that can make a difference.

We find we have to educate ourselves and for sure, get all legal ducks in a row while your husband can still legally sign a document. An Elder Law Attorney, with only you at the appt. would give you much information and can often assist with positioning you best financially for the future. Knowledge really is power, so best to get all you can.

You will have decisions to make as to how to position yourself, what you are willing to do in the long term; that will evolve as you move through the early stages. And yes; our Loved One (LO) will often blame US for everything and take anger out on us; it is safe for them to feel that as they know us but does not make us feel better.

Do try to find a dementia support group you can attend, and 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 are no fees for this. Consultants are highly educated Social Workers who specialize in dementia and they can be very helpful, and also a good place to be able to openly vent one's feelings. They can also often assist us in our problem solving. Sometimes getting counseling for ourselves is helpful in keeping us centered and somewhat lessening our stress.

Do come here and talk and read; there is a lot of experiential wisdom here and we all support one another and that now includes you too.!

Warmest of thoughts are being sent your way and we will look forward to getting to know you better.

J.

Jeanne C.

Hi @miaR and welcome. Great advice above! I just want to add that with changes you can make in how you interact with your LO, getting educated about dementia, and appropriate meds from Geripsych, it gets a little easier to deal with. One thing I tell myself, that may help you (or maybe not) is "he's not giving me a hard time, he's having a hard time."

mrahope

You've gotten some excellent advice here, and I have used many of these suggestions myself, particularly tending to legal and financial matters first and educating myself about dementia. I would add to feel free to seek counseling/therapy for yourself. It has helped me greatly. Look at it this way: This is you getting help for yourself so you can continue to care for your loved one. Your LO cannot help you understand what's happening to him, but a qualified counselor might be able to.

Beachfan

MiaR,

You are in a difficult place; sadly there is no escape. Having navigated the journey (DH dx, May, 2010- passed April, 2023), I have 2 pieces of advice in addition to all the tips already given. (1) Acceptance - - probably the hardest pill to swallow, but until you accept your new normal and plan accordingly, you’ll be miserable and fighting an uphill battle. It comes to different people at different times, but it comes with a measure of peace. One day at a time; you can do this. (2) Don’t go looking for trouble. You will hear and read of many Alz associated horrors. You may experience all or none of them; plan for the worst and hope for the best. One day at a time; you can do this. I should add (3) Rely on the empathy, experience, and expertise of the caregivers on this forum. You will be astounded at the wealth of knowledge and advice found here, and more importantly, the camaraderie and understanding you will experience . Stay strong. You are not alone.

Denise1847

Hi Mia,

Please read "the 36 hour day" and the attached Tam Cummings handout. Check Her out of YouTube. Also, Tepa Snow on Youtube.

ALZ Stages TamCummings.pdf

terei

If he is resistant to seeing a geriatric psychiatrist for treatment, keep in mind, If you ever feel threatened AT ALL, call 911. It is sometimes utterly amazing how well transfer from an ER to a geri psych ward for assessment + medication can moderate out of control behavior.

As I mentioned to someone else today, do not fall into the trap of normalizing a bizarre/out of control situation. Your life + comfort are AT LEAST as important as your husband’s. It pains me to hear how people will sacrifice themselves over + over to the benefit of their PWD and ignore their own physical, medical + emotional needs. It doesn’t have to be that way, particularly if you are at all able place your LO at a facility that has far more resources than you have as an individual.

ghphotog

Yes, you'll be the bad guy most every day but there will be good and bad days and as things progress remember you are doing your best for him and remind yourself that you are in the right. He will never understand your decisions. Don't take anything personal, I know, easier said than done. It's very hard to see the changes in your LO and it seems they can fight you all the way.

Try not to second guess yourself and your decisions, I know I know, way easier said than done. You didn't ask for this and neither did he but now you are the sole decision maker in the family. Don't feel guilty for blowing it, for getting frustrated, for losing control or for wanting to run. We all want out, I know I do but I'll carry on as far as I can but I'm thinking that won't be much longer and I'll seriously have to think about placement, finances be dam'd. I've never heard of any lone caregiver actually enjoying this journey but I'm sure there might be a few out there. I'm not one of them for sure.

IDK, I say all of this to say take it one day at a time. Get help when you can, wherever you can. If you just can't do it anymore there is no guilt or shame in finding a place that will care for him better than we can care for them by ourselves. Take care of yourself first and don't feel guilty for it.

miaR

Firstly, thank you to each and every one of you beautiful people...I am beyond grateful for your words, help, and experience. I will slowly read and digest these replies and follow as best I can. Thank You!

For what its worth, I am a very spiritual person, I believe this is a 'lesson' for me as well for DH. My God does not give more than we can bare, but man she is totally testing me on this...funny thing, I am slowly realizing that I have been through this disease already and didn't know it at the time. DH family member! It lasted forever and we were all the bad guys with that person, for no reason. I see that pattern exactly repeating itself.

What a wicked and complicated disease! Bless all of you who have been or are currently on this journey...we will hold each other close.

Funny, tears are not dried with tissues here, its towels at the moment...can you relate?

Mia~

boogerbear

https://alzconnected.org/discussion/67400/im-new-here-and-i-want-out

I hear you for sure. Anger and distrust has been our issue for so long. Did not know what was going on until I noticed memory problems. My kids want me to leave but there is no way out now for he has no family to help. It is me! I do burn out and go to exercise and work at a club that I belong to. He does not want people around at all. Hates my family and tolerates my children. He stays home all the time with no interest now. I do go during the day for he can take care of his needs but I take care of everything else. I think I am going to hire someone to come in for two hours a day so when I want to leave town, I will know he is okay and will eat.

I pray each day. I am unhappy with him and just want out and I know that he could not take care of himself. We have been married going on 40 years and this is my second marriage so my children are not his even though he helped me raise them which I will never forget.

I need suggestions or just know I am in the same boat as other people are.

Carol

GWB

I was recently diagnosed with Dementia. Thank you to everyone for sharing. One of my biggest fears is my wife's well-being as we head into our 50 years of marriage. I read the accounts and shutter at the possibilities she may face. Over our years together she has always cared for me when I was 22 or ??. She is amazing and never lets me see her frustrations except through humor, which I usually understand what she means.

This disease is new to me and not so much to her, she has known for years I needed direction and a lot of her time.

This reinforces what I felt from the start: the "caregivers" need support and tools. Me, I will be fine. G

mkwilkinson

Good evening everyone. I am a very new addition to this discussion. My DH has been formally diagnosed for several months. I don't recall when I first noticed symptoms. He suffered more than 6 TIAs in 2020 which officially began our journey. It was after these that it became obvious. He is no longer driving and he seems to be resigned to it. He was previously married for 53 years when his wife died of ALS in 2019. We met at church and married in 2021. We sold our respective homes and bought a new house after marrying. This has been an obvious difficulty with his memory. He frequently believes we don't live alone, that someone else lives with us. And also thinks that we need permission from someone to be able to live here, as if a nursing facility or something g like that. Usually all it takes for me to explain is that we live in a single family dwelling and don't need permission to live here. I expected that he would be confused about who he's married to. But for now he seems to remember that his wife has passed away and I am his wife now. There are so many things that I'm not sure of and will need help with as I move forward in this journey. It's so reassuring to know that I can find friends among you and a place where I can get some of my emerging questions answered. I don't even know the questions that will come. They are currently swirling around my head and regularly pouring out at different times of the day. I do feel very lost and worry that I will smother with this disease that's now taken over our lives. Thank you for giving me this space to vent and ask my questions. I'm a very faithful believer that we are going to get through this but not without a lot of bumps in the road. I appreciate any thoughts and advice.

Nowhere

https://alzconnected.org/discussion/67400/im-new-here-and-i-want-out

I relate. It sounds like your husband might, like mine, have agnosognsia.

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

With Alzheimer’s they lose the ability to learn and reason. I became a “trigger” (derogatory term, but you get the picture). The middle stages 4 and 5 were the worst as he knew something was wrong, but he was “standing there talking with me” and so there was nothing the matter with him”. He accused me of poisoning him and would call 911 for help, make doctor appts for himself, and simply wanted out of our marriage so that he could be free of the controlling bitch I’d become. He’s now in advanced dementia (still walking and talking) but cannot hold onto a thought to strategize at all. We are in a peaceful period again. He was placed in a memory care facility at the worst of it, as I broke and couldn’t operate with the turmoil. Now, he smiles and stands when I enter and enjoys car rides, and just sitting and holding hands while we watch tv in his room. He is comfortable with me to shower him, and I see he brushed his teeth and tuck him most nights before going to my own home. I’m learning how to live alone. We’ll have been married 50 years this summer. He’s been on this long path 17 years. It will be a couple years yet until I’m seventy and he, ten years older will be eighty. Did I tell you he’s the love of my life? And the staff love’s him as he’s so gentle and polite. The behaviors don’t last forever. And, yes, medications are available to help with difficult middle passage.

Take good care of yourself. Develop a plan A, B, and C!

boogerbear

https://alzconnected.org/discussion/67400/im-new-here-and-i-want-out

I sure can relate. My DH of 40 years would not go to the doctor accusing me of tricking him. He had anger issues which scared me but I knew he had dementia but not sure which state. Each night he had a time he would wake up and check the windows and doors holding his gun. I would talk him down to get back in bed that all was okay. I was planning on getting him help after Christmas when my grandkids left. He had issues with my oldest son who was walking down the hallway at 2:30 am and the dog barked and woke him up. He got his guns out to shoot him and I tried to talk him down but he was a threat to me. I called 911 to get help. They put him in the hospital and medicated him. My guilt is that I would not go see him until the last day before he was taken to a psychiatric hospital to get him medication that would level him out. By the time we picked him up, he was in pull ups. Of course his speech was hard to understand which he already had. His dementia got worse and he did not know me. I was so saddened by this and eventually he could not walk without a wheelchair. My regret is I should have brought him home but was scared for the police took his guns out of the house and he would be so angry. After being home, he passed away. This has been so hard but again, I should have gotten him in to a neurologist and psychiatrist but I knew he would have fought it. He is now at peace and I miss that person I married.

ButterflyWings

@boogerbear please, no guilt. This is what one of our longtime members always used to say. No guilt. It sounds like there very likely would have been a much more devastating ending if you had not gotten him to the medical professionals for help.

It may sound unfeeling and I do not mean to, but our LOs are dying of dementia and the brain devastation can take others with them as well, unnecessarily. You and the rest of your family did not have a terminal disease as far as I know, but his aggression with access to weapons, and attempting to shoot someone would not have ended well. Obviously, guns are very final. Please, please do not feel you should have done something different as if you caused his decline and passing. We did not cause their disease and can't cure it.

I am so sorry for what you went through. None of this is your fault and it sounds like you saved your son's and your own life as well as possibly others. That was the right thing to do. The people we married are long gone by the time this disease takes over to the extent your DH had reached. We truly understand how horrifying and impossibly hard all this is. I wish you peace.

forthelove

https://alzconnected.org/discussion/67400/im-new-here-and-i-want-out

still working on getting a diagnosis. I can relate to everything you are saying. Having no one to vent my frustrations to makes it even harder. I’m going to find an Alzheimer’s support group to help me cope. Hang in there.

forthelove

https://alzconnected.org/discussion/comment/191282#Comment_191282

Well said. I do the same things with my DH

boogerbear

https://alzconnected.org/discussion/comment/197933#Comment_197933

Thank you for the encouraging words. I am learning to forgive myself by using this website to talk to. I do miss that other person. It was tough to decide to call the police and they put him in the hospital to calm him.

Dogsaremylife

https://alzconnected.org/discussion/67400/im-new-here-and-i-want-out

Oh boy, can I relate!! This change of character is apparently very common and it makes the misery ten times worse for YOU. My husband was diagnosed 6 years ago and has descended into Stage 6.5 within the last 6 months. He needs full time care so I find that I am frequently so overwhelmed I want out, too. Try to remember, that all things change. It will not be like this forever, and you will come out stronger. Blessings!