New Here

Yasadora

Hello,
My mental health therapist finally gave me enough of a push to help me take this step.
I have read a number of discussion threads and it appears I found a good place.
I'm 62 and my DH is 67. We are a second marriage and have been together 16 years .
We both are retired, him, because he had to and me well I decided to be with him during this. He is a psychiatrist and I am a mental health therapist. We both knew something was "off" about him.
He underwent testing over two years and both times it came back dementia.
So here I am, feeling very alone and sad.

My husband has very early stage symptoms, stage three. Very few people even know this, additionally his children, despite my talking to them, deny anything is wrong.
There is a new symptom. He is argumentative and agitated.
He gets frustrated and won't let me help. I sometimes feel like Alice in dementia land.
We are currently on what in my heart I know, is our last vacation. We lived to travel. But this is nothing but heart ache.
I know this is a horrible long road.
I guess I just needed to vent.

Iris L.

Welcome! Do you know about anosognosia?

Avoid frustration. Make his and your lives easy! Read a lot of threads and post a lot. This will help.

Iris

RickM

Yasadora,

I am so sorry for you. I’m glad that you have some understanding of what is ahead. It’s difficult and different for all of us. As Iris said hang out here and read lots of threads. Put together a support network. Get as much information as you can deal with and figure out how you are going to survive this. It’s not something you can hide or, frankly, want to hide. Hopefully his kids will come on board. You’ll need them.

My wife and I, along with our son, did lots of outdoor trips over the years. The last few years the trips just became too much work and not much fun. So sad.

Best,

Rick

M1

Welcome, this is a good place, it has kept me going through three very difficult years.

When my partner was stage three in 2014, her sisters absolutely did not believe me when I told them that their adored and admired oldest sibling was developing dementia. It took a long time and much progression for the reality to sink in. I can only imagine that it's hard for a child to accept, but I hope it's not an additional burden for you.

I remember too the anger and frustration she felt when things didn't make sense. For a long time i tried to reason with her or correct her, be her accessory brain so to speak, but that did not work and did not help. It's heartbreaking to watch, and hard to avoid being the target of the anger and frustration.

I'm sorry you are facing this. But there are many kind and experienced people here who get it.

Denise1847

Welcome, but so sorry you have had to be a part of our group. One thought on the recent anger is to contact his doctor and see if there is a med to take the edge off of the anger. That has to be so difficult to handle.

Read the 36 Hour Day, sort of like the bible for Alzheimer's. It helps to better understand the disease and not take the behaviors personally. Find ways to get personal peace, to take care of yourself and find joy in whatever way you can. You will go through cycles of anger, self-pity, envy of others' seemingly perfect lives, etc. It is a good idea to find a therapist who knows about the disease and grief. We, caretakers, are all in a cycle of grief. We are grieving the loss of the life we had, we hoped to have and the loss of our spouse. Stay strong. My current method for copying is "one day at a time", forge forward (no looking back, one looking sideways at others' lives). Learn all you can, go to an elder attorney, get a POA and listen to these experienced people on this site. God bless.

Ed1937

Welcome, Yasadora. I'm sorry you are both dealing with this now. Being a mental health therapist, you might have heard of some of the things caregivers deal with. But you haven't experienced it yourself. People here will hold your hand, and help you through the rough times ahead.

I agree that you should talk to his doctor to see about medications that could help. The right meds can make a world of difference.

Seeing a CELA (certified elder law attorney) is something that should be done soon. If you put it off, it's easy to keep putting it off, and the time will come when it is too late to fully benefit from seeing one. This is a very important part of the dementia experience.

Davegrant

Welcome: I am glad that you are here. Reading these posts is a great support for me as I travel this road. I too have found this to be a lonely journey and I do find comfort reading these posts because they tell me that I am not alone, but others are having similar experiences. And I am able to learn from others. One of the lessons that I am currently learning is that I am the one that has to change that my DW cannot change due to this disease. I am learning that this disease prevents her from being the person I married and lived with for 54 years. I can barely comprehend this lesson but am learning to accept it one day at a time, one failure/success at a time. The cooking, cleaning, laundry, shopping, and entertaining family members was one part of the change in our roles, but the harder part for me is the emotional challenges of accepting our lives and our relationship with each other. I reach out as much as possible to local and online support groups, my wife's physician, and supporting nurses, and recently asked for help from the VA counseling. As my wife's disease progresses each change becomes a challenge for me as well as for her even if she is not aware of it.

I wish you well in your journey.

Dave

ghphotog

I've been in this journey, not just a journey but a nightmare you can't wake up from for a long time. Countless second winds. My DW is entering a new phase. She no longer seems to shadow me like she has for the last year or so. She won't accept my hugs any longer when she's scared but rather pushes me away screaming and yelling at me to get out or she's going to call the cops. (She doesn't know how to use a phone.) This starts first thing in the morning, every morning and can go on most of the day sometimes. Possibly a UTI. Waiting for the results.

I thought the shadowing was a difficult stage but compared to now. . .

One good thing, for the first time in what seems years I can have a few minutes to myself where she isn't glued to me. Good and bad about every stage I guess. Well not good but different is more like it I now know for sure that I can't live or take care of her if she stays in this phase much longer so MC is looking a lot closer to reality now.

Hang in there, try to take good care of yourself, eat well, get as much sleep as you can because you will need all of the strength and endurance you have and there will be countless second winds. Wish we could say "It won't be that bad!" And some days aren't and I felt honored to carry her every day but I haven't taken good care of myself, hangovers can make it impossible to be a good caregiver and so on.

Put as many ducks in a row as you can because every duck that's in it's place is one less thing to worry about. I've put all of my bills on auto pay. For me that helps.

pmkbb

We are living a parallel life. We are also a second marriage for 18 years. His family is in denial or estranged. He is constantly on the move, “so busy” thinks he is fixing things, gets angry if I say anything or try to help. He has receptive and expressive aphasia so it is difficult to communicate. He swears fluently. His cognitive abilities are declining and I worry about what will happen to him if I was not able. He thinks he is fine.
He is not the same person I once knew. It is
heart and soul crushing.

cavenson

Like you, I've been reading posts for over a year and finding them helpful as I traverse this painful journey with my DH. He was diagnosed with MCI about 5 years ago, and the diagnosis was changed to ES almost 2 years ago. He has become increasingly prone to angry arguments and accusing me of things I have not done. Recently, I discovered YouTube Dementia Careblazers, and a couple of the videos really spoke to me. Life will be more peaceful if you avoid four things: arguing, correcting, reasoning, and testing. There is no way you'll ever win an argument with your DH; correcting him just angers him; he is past the point of reasoning; and testing him just frustrates him. I've only been consciously following this advice for a few days, but it is already paying off. Surprisingly, my DH just told me this morning that he doesn't know why, but he feels much better being with me lately; and he even thanked me for caring about him and doing things to help him. Things could change next week, but today's a good day.

annewilder

I am new today, too. I am a retired physician and my DH is a retired PhD counselor. My husband's father had Alz and his wife (second marriage) was faced with similar issues....unfortunately my husband and his sister weren't seeing the issues with their father that his wife was witnessing. I would like to communicate with you if you'd like. We are older at ages 70 and 72. Thank you and good luck.

PookieBlue

Yasadora,

    You are not alone with your struggles. You sound as though you are where I was about eight or so years ago. My DH is 7 years older and I retired about five years ago knowing he would keep needing me more and more. I remember him being argumentative, angry and unreasonable much of the time. I learned some hard lessons along the way, all of them self-taught because I didn’t have the benefit of this site until earlier this year. There were times I’d look at him and just see his demeanor change, and this evil dementia persona that wasn’t my sweet husband would emerge. Luckily, that particular metamorphosis didn’t show it’s ugly face very often and I taught myself how I could distract and redirect him. The arguments became less frequent, I’m thinking within a year or two. Of course they were replaced by new behaviors. They always are. Dementia world is really a time warp continuum that the caregiver has gotten caught up in. 

    The main lesson I learned is that I was the one who had to adapt to his confused world. He could no longer join me in mine. I learned to avoid the triggers that would result in unwanted outbursts. I found I could no longer trust his judgement nor trust if what he said was accurate. The loss of trust issue was a tough one to adapt to. We lost thousands of dollars before I wrapped my head around that one.

    Much to my chagrin, there are very infrequent days when I just don’t have it in me to don my Pollyanna persona, but I pay for it as the dementia world takes over for the day. I am aware of the many challenges ahead in this journey and am always trying to prepare myself for the inevitable.

    What has worked for me is to try to create an atmosphere of calm and of some semblance of normalcy. I play easy listening music most of the day and try to manage the multiple redundant questions and comments. I make sure most of his needs are met and I micromanage everything in our lives. My DH is a very funny man, and I use humor to get through the conundrum. I also stopped talking about dementia since he has anosognosia in that he has lost the ability the recognize his illness. The few times when he becomes somewhat lucid as to his impaired cognition actually disturb me, as he is so saddened by it and his sobbing is heartbreaking. I realized a couple of months ago that sometimes he thinks I’m his sister or cousin, sometimes his wife, and sometimes some cute 30 year old brunette that does everything around here. At first there were tears over that loss of connection, still are at times, but he always calls me sweetie so that softens the blow.

   Yasadora, I hope this helps you a little bit. Always take care of yourself though. That is one area that is my weakness. I still need to work on that.

Valerie

Jeanne C.

Yasadora,

The amazing people on this board will offer valuable advice and a shoulder to cry on. They have been my saving grace. I recommend to continue posting when you need to get it out. I really find comfort in talking with others who get it.

Drapper

I am in such a similar situation. And this is my first time on here. My DH, of 15 years, my 3rd spouse, is in his 6th year of Alz and is getting very agitated and angry lately. He is 75 and I am 68 I’ve been trying different meds with his neurologist, but not finding much relief. I am having such a hard time dealing with things. Which I know my anger and frustration are making things worst. I’m hoping to find some support here too.

Denise1847

Hi Drapper, Welcome and sorry you have had to join us. Your anger and frustration are so normal and expected. Please don't beat yourself up for that. I usually do ok now, until I get tired and then I do not cope very well and the anger and frustration shows. It is interesting to note that I used to think that I was angry at my DH, which did not make sense, but I have come to realize that my anger is at the situation, the loss, the fear and the constraints. My suggestions for coping are: learn about the disease for what it is - brain damage. Find things you can do with your spouse and do it now before the disease progresses further. Seek counseling with someone who is familiar with the disease, be persistent with the doctor re a med that may make DH less anxious (there are many anti-anxiety meds). Find things you can do to escape the strain (reading, walking, exercising, calling friends etc.). Get a certified legal elder attorney to get a POA etc. Look into getting help to come in (aides etc.) and a memory care unit. Once you have an understanding, a means to cope and a plan, you may feel more in control of the situation.

PookieBlue

My DH is on heart meds, BP meds, gout meds and many supplements. I am a retired Pharm D and have chosen not to seek other medications for any negative behaviors at this time. We have managed well so far without them. I imagine when things get worse, I will consider anti depressants, antipsychotics or anxiolytics if it helps to keep him at home, but that is last resort in my book. I do not want to deal with the probability of drug interactions and side effect complications.