I’m new to this forum-need support

Debbie 1128

Hi, 

My husband was dx with “MCI, likely early AD”, in November 2020. He currently denies that he has had any decline since, although I have seen decline mostly with his mood and behavior. I think it can also be difficult to see changes when with the person daily. He retired in December 2021 because he was not performing well in his job and it was a toxic environment. I believe that with the relief from the stress he was experiencing in his job has made him more comfortable and he doesn’t see the decline. He does have a follow up assessment coming up to measure any changes. 

I am not new to AD, my mother is in late stages. I have seen her decline so much and it’s so heart breaking. She’s still “with us” but not really with us. 

My husband gets frustrated and angry at minor things and takes it out on me verbally. He has never been this way. He has always been loving and gentle with me. I am terrified that the changes I’m seeing will only get worse over time. I’m already sad a lot of the time because of this. I know I need to live in the moment but it is so hard. I just don’t know how I will cope. 

I guess I just need some support and strength. I have looked for support groups in my area but not finding any. 

Thanks, Debbie

Michael Ellenbogen

There are some online if you are intrested in doing it from home on your computer.

Debbie 1128

I am, I may not be looking in the right place.

Crushed

Welcome Debbie lets see what we can do to help. 

1) you must have your legal and financial house in order ASAP

2) DW was MCI of the amnesiac type in 2010 and EOAD Alzheimer's in 2012

3)  everything you describe is routine especially in men 
 
4) ages and state of residence are very useful for us to help.

5)  driving is as issue and guns or weapons are a priority

 

Joe C.

Debbie, Welcome but sorry you need to seek out our community. There are many good people here with lots of experience experience to share. I know you mentioned that you have some experience with Alzheimer’s so hopefully you have started putting your legal & financial house in order. If not you should put seeing a Certified Elder Law Attorney at the top of your list, not doing this early can have disastrous consequences down the road. As for the local support groups, have your search on the alz.org main page. I know a lot of groups went online during Covid but some in person groups are starting back up. Another option might be to call a local Memory Care facility and ask them if they sponsor or know of any support groups. Good luck.

Debbie 1128

Thank you! We are updating our legal stuff. He is fine driving for now.

Debbie 1128

Joe, 

Thank you for your reply. 

I have searched for online groups. The only ones that come up are based in CA. I’d like to find something local so I can hopefully be able to do in person when they start back up. I may need to make some calls.

We are in the process of reviewing and updating or legals.

Thanks 

JDancer

Welcome to this forum. You will find a lot of good advice and support here. 

I'm sorry my advice is going to be a bit harsh.

You say, "he's fine driving for now." Really? Have you had him evaluated by a professional? A PWD who cannot control themselves should not be allowed to (try and) control a car. It isn't safe. 

A lot of the early signs of dementia are easy to miss, even by those of us who live with the PWD.

A PWD, even in the early stages cannot make the split-second decisions that safe driving requires. If he was in the early stages 2 years ago, it seems unlikely that he can drive safely

And what would happen if his anger appeared while behind the wheel?

Please stop him from driving. Lives (may) depend on it.

M1

Welcome Debbie--this forum is more supportive and more knowledgeable than any local group I've found, by a long shot.

I'm so sorry you're going through this.  I think a lot of anger and irritability are common in the early stages--I certainly saw it too (my partner is now stage 5 and recently went to memory care).  She was very frustrated at losing her abilities, but also unable to recognize the deficits--if you're not familiar with it, look up anosognosia--which is this common characteristic of the disease.  Your husband is not in denial, he really can't recognize that anything is wrong.

Dealing with this in a spouse and a parent simultaneously has got to be tough.  I'm so sorry.  but like I said, you've come to the right place.

Michael Ellenbogen

II would start by looking up UFC or call Alzheimer's Association.  They both have them. Therre are many others.

Kenzie56

Hi Debbie, I thought the same thing a few years ago when my DH (with a perfect driving record) seemed to be able to drive just fine to the grocery store. It was 3 miles away - what could go wrong? Well, on his way home, he ran a red light going 45 mph and T-boned a dump truck. No skid marks, no serious injuries, thank goodness. He totaled his car and his license was taken away. We were both sued by the truck owner for negligence. I wasn't even in the car...but because I co-owned it and knew he was going through testing for MCI (no dx at that time), I allowed an impaired person to drive. The week after the accident, he had a formal dx of mixed dementia. In some states, insurance companies will not cover the cost of accidents if there is a dx for dementia. Our attorney explained it was like serving alcohol to a person after it is clear they are impaired and they have an accident on the way home.  Long story short, we finally settled out of court and it was hell on top of stress of being the primary caregiver. I was so happy and lucky he did not injure or kill anyone. You'll find that this journey holds many surprises...just when you think you know what your LO can or may do, things can take a 180 degree turn in a heartbeat. Ever since being blindsided by the accident, I make a point to read the posts on this site every day and I take notes...just to be prepared for things that may or may not happen. There is so much good advice and things to learn from generous people here sharing their experiences.

Michael Ellenbogen

SSorry  I meant HFC. It's that actor.

Debbie 1128

Wow! Jdancer and Kenzie, Thank you for your honesty. I need to rethink the driving! This is so hard. Kenzie, I’m so sorry you went through all that. I definitely don’t need anything like that.

Debbie 1128

M1, yes I do realize that he can’t fully grasp his condition. With what I’ve seen my dad go through so much with my mom and the toll it has taken on him, I am just filled with dread and fear. It’s hard for me to not project into the future, the what if’s. Thank you for your support.

Paris20

Welcome, Debbie, to the group no one wants to belong to. Your husband sounds like mine did a few years ago. One thing that it’s important to know is that your husband may never believe he has a problem. There’s even a name for it, anasognosia, the inability to understand or accept his diagnosis. My husband is now in a skilled nursing/ memory care facility and still thinks he’s OK. He had a paralyzing stroke last month and thinks he can walk. 

These behaviors mean that we caregivers must take responsibility for our LO’s care. There’s no explaining, rational talk, or begging that will yield your hoped-for response. Sometimes we even have to lie to keep him/her safe. My husband hasn’t driven for three years but thinks he still does. He refused to listen to his doctor’s pleas so I became creative. I hid his keys and each time we went to the car I beat him to the driver’s seat and told him he’d drive next time. There was no next time but he never remembered that.

Finally, keep your eyes on that irritability. My husband’s moodiness became verbal abuse. I feared it might become physical. On these forums I learned about the various medications that can help. Without them, my husband would not have been able to live at home during the last 18 months.

Buggsroo

Debbie,

The irritability is in the early stages, after awhile you learn how to deal with it. My husband was awful at the beginning, he is now in the toddler stage, he says no to everything, I have learned to wait and bring it up again when he has forgotten that he said no. 

The thing is you will have to be in charge, the banking, bill paying, providing meals etc. It does go downhill and you will have to reach deep down inside to keep on an even keel. There are many knowledgeable folks here who are only too glad to help. Welcome to the forum.

Jo C.

Hello Debbie and a very warm welcome to you.   I am so very sorry for what is happening and can well understand  the stress and concern.  You are very wise in reaching out for connections; it will be very helpful in the future. We are all here in support of one another and that now includes you too.  This Post will be a bit long, but there is much to share.

You have been given good input by some of the Members. The suggestion of seeing a Certified Elder Law Attorney is really a good one.  The Elder Law specialty is really necessary as there are so many bits and pieces of technical law involved, you  do need a specialist to assist setting things up to best assist and also to protect you.

Does your husband have a dementia specialist on his care team?  If so, that will bode well for the future.  If not, it may be time to seek out a specialist.  This category could include either a Neurologist who sees dementia patients as a routine part of his/her practice; or a Geriatric Psychiatrist, or Neurobiologist who specializes in dementia. 

There are multiple different kinds of dementia of which Alzheimer's is only one.  It is crucial to ensure that the diagnosis for dementia type is accurate as meds for one type may be contraindicated in another.  The specialist will be best at doing that, and also best at prescribing appropriate meds both now and as the condition evolves.

If your husband has already applied for disability; simply disregard this bit.  If he has not, the government has now put Early Onset Dementia on the "fast track" for swift disability  approval and that has been helpful for many people in such a situation.

The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you should 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 supportive and can often assist us with information and even with some of our problem solving.

I am sorry that you are dealing with the anger and irritability.  If this worsens or is affecting the quality of his life, it would be giood to have the physician specialist informed and have medications adjusted.  It is so hard for our Loved Ones (LOs) who are losing their abilities and they can sense it but are not processing the dynamics well; and even if they are, anger is often one of the emotions being felt.  It is also part of the grief for what is happening. 

One of the things we soon learn on this journey, is that if our Loved One (LO) has a negative change in behavior with irritability and acting out, to have them checked for a "silent' urinary tract infection.  These UTIs are called "silent," because they have no physical symptoms, but there may be a significant change in behavior to the negative side of the ledger until the UTI is treated.

The most important thing to know is that if he acts out toward you in a dangerous manner, that cannot continue and must be brought to care with the specialist so it can be addressed. If ever in dire danger, it is perfectly okay as well as necessary to make a call to 911.  If that sort of behavior does arise, and many never have that happen, be sure to carry your cell phone on your person at all times and to have a locking door to a room that you can go to if you cannot get out of the house. Sorry to bring that up; remember, not many have that happen, but it is a just in case sort of input.  When dementia is diagnosed, it is also best to removed all weapons from the house, especially any firearms. 

Many of the Alzheimer Support Groups are still meeting online, but there may be some that have started opening, if you cannot find information for this online, the Alz's  Helpline may have some information.  Also, this place here, AlzConnected, is of wonderful support and the Members on the Spousal Forum are awesome, dear people who really understand.  There is much input from caregivers who are much farther down the path of this unwanted journey and they have good experiential information with helpful input and advice.  It is also a good place to come and vent when we need to be heard; we all understand and "get it" from where the rubber hits the road so to speak.

Please do continue to let us know how you are and how things are going; we are deighted to meet you and we truly do care.

J.

Ed1937

Hello Debbie, and welcome aboard. Sorry you have a reason to be here. You have some excellent advice in the posts above. Please heed it. It's all good.

It sounds as though you are not familiar with anosognosia. Here is a pretty good video explaining what it is. Why your loved one doesn't believe they have dementia- It's NOT denial. 

Joydean

Hi Debbie and welcome. You’ve certainly received a lot of good advice. Take your time and reread the post. Personally I’ve learned more from these wonderful people than I have from dh’s doctors. Best of luck to you and your dh.

JDancer

Kenzie56 Thank you for sharing the story of your LO's accident. Stopping a PWD from driving is so difficult, it's good to be reminded why it's so important.

My personal stories are a little different:

1) A close relative was killed by an impaired diver. Dementia was not the impairment in his case but the driver chose to drive when they shouldn't have. If you shouldn't drive, don't!

2) I was a passenger in a fatal accident. The driver may have been impaired, it was never made clear. The guilt can be devastating, I would not wish anyone to experience it.

3) I frequently walk and ride my bike. If an impaired driver hits me- even at a low rate of speed- the consequences could be devasting, for myself and my DH. These old bones break easily.

Let keep everyone safe!

Faith,Hope,Love

Hi Debbie!  Welcome!! I'm new to this forum also.  The advice you'll get here is priceless.  I've found so much support and help in just the last several days.  Driving was, and has been an issue for me and my DH.  He did most of the driving.  So, I told him I wanted to make sure I could keep my driving skills sharp and I've been doing all the driving for over a year now.  He'll never admit it, but I think he's relieved to have me driving. 

However, as everyone has mentioned, things can change and it can happen quickly.  Over the last few days, he's been wanting to drive.  In the beginning I told him he couldn't drive since he has dementia.  His response was to say that he doesn't have dementia.  I also told him he couldn't have the keys.  That provoked a lot of anger from him.  So, I've tried another tactic.  I told him he had the keys last.  He's spent days looking for them.  I've even helped him look for them.  I also try to distract him with something he likes to do.  Right now he's working on a jigsaw puzzle.  I have a few that are simple enough for him to do by himself and make sure they are bright colors.  He likes that and sometimes it works. 

Hope this helps.

Rennbird

Once my husband was diagnosed with AD, I knew that he should no longer drive.  I called his best friend to come to the house and we three discussed it a bit.  I then left the house so my husband and his friend could discuss the situation man to man.  I emphasize this was a friend and not a relative.  When I returned home, my husband said he would give up his car keys.  During the time I was out of the house, I sat in my car in a vacant parking lot and cried my heart out for the millionth time.  In my case, my husband never drove again.  He never admitted he had Alzheimer’s, but he did accept this restriction.  Peace be with you.