I don’t know what to do—this is all so new to me…..

Tamela

My DH has shown signs of dementia/alzheimer’s for a while now. He is 13 years older than I am. He’s not to the point of requiring outside care. Just memory issues. He is becoming more obsessed/agitated with the things he makes up in his mind that are untrue but I guess are very real to him. It seems like we are constantly re-visiting the same conversations and it’s happening more frequently. Unfortunately, it is very hurtful to me because he seems to not trust me whether it is with money or my free time. Oftentimes he accuses me even though I haven’t done anything. This is all new to me and I end up in tears after he blows up. He’s fine, but I am left once again trying to pick myself up. Today was particularly hard after having a day out with my sister yesterday. He was fine when I came home yesterday, but this morning was the total opposite. He did not sleep thinking about things that were not true. He just lets the thoughts fester and they continue to grow. Today I just couldn’t handle it. I was so emotionally drained and distraught, that just retreated back to bed and am depressed. I know it’s not all about me. I know it’s not him, but it’s the disease. I guess I just need to find a local group of others in the same situation, but so far with COVID I haven’t been able to do that. Sorry to go on and on, but thank you for letting me vent. I know it is much worse for others, but I just needed to reach out before I lose my sanity.

JDancer

Welcome to a group of which no one wants to be a member. I'm so sorry you are going through this. 

My situation is very similar to yours. Life has become an unpleasant roller coaster. While none of us can fix the big picture, many may be able to offer suggestions. And we will all support you and validate your feelings.  We are here for and with you.

Buggsroo

Hi Tamela and welcome.

My husband is twelve years older than me. His dementia started off with increased anger, agitation etc. I don’t get accusations but he does wear me out. Today is an example of what I am talking about. I do a weekly shop for all his food, we pass buy a senior’s résidence on the way to the grocery store. An elderly Chinese lady with a walker was walking in front of us. My husband shouted at her, mimicking broken English. I apologized to her and told him to stop it. Long story short, he has lost all social filters.

One thing I have learned here, no two cases of dementia are the same. However, the folks here in this forum have gone through the mill dealing with a partner with dementia. Please remember, it is the disease talking, when he accuses you of things you haven’t done. Good luck, and maybe check into some counselling if things become unbearable. 

Tamela

Thank you so much. I know I am not alone, but it sure feels like it sometimes. I am sorry you are going through this as well. I hate this disease

jfkoc

What you are living with is very difficult no matter the cause. That said, you want to be certain to follow the correct protocol for diagnosis. This will weed out any numbers of treatable causes for your husband's behavior.

Tamela

I so appreciate your reply. I am soooo sorry—I feel your pain.

I know it’s not him and it’s the disease, and I definitely need to work on how I react in those situations. Grieving what we had and knowing life will never be the same.

Tamela

This is the problem….he doesn’t trust doctors and refuses to go. He has always been very healthy and taken care of himself.. At this point, I feel I can’t force him to go but know as things progress, that day will come when I will have to seek medical intervention.

M1

Hi tamela. The time to take him is now. If you dont, you might be missing something treatable. You may have to dissemble to get him there-a common strategy is to say it's required or you'll lose insurance, or similar.  Write down all your concerns and give them to the doc ahead of time. You don't have to discuss his memory loss and delusions in front of him. If he's truly delusional and it sounds like he is, he may be fairly advanced already. There are medications that may help. Good luck.

Virgil61

Hi - I agree with M1, you really ought to try and get him to a doctor.  When I first took my wife some years back, they did a lot of tests looking for a physical cause.   In her case, an mri showed the dead or non-active areas of the brain - which is irreversible.   That said, the mri could have shown something that COULD have been corrected.  What if your husband has something that could be corrected at this point....  Just a thought.  Good luck to you Miss.

Ernie123

Tamela: I would agree with the advice given about the importance of getting a diagnosis. You could visit the doctor first to outline the situation and perhaps arrange for the doctor’s office to call him to come in for some reason. You should also  contact a lawyer to set up POA’s for finances and personal care and a diagnosis is needed for that. My DW developed rather severe anger and paranoia issues,  totally out of character.  Her doctor referred us to a Geriatric Psychiatrist who effectively treated those symptoms with a low dose antipsychotic medication. She became calmer and happier and my life as a caregiver became tolerable. Unfortunately things will not get better on their own. Another suggestion is to reach out to your local Alzheimer’s Society. They will have counseling for you about how to work through all these stressful challenges. Joining an Alzheimer’s Society support group of other caregivers was very helpful for me. I still attend, now via Zoom due to Covid, even though my DW has lived in MC for a year and a half. My experience has been many friends and even family just don’t get it and you feel pretty much on your own as a caregiver. This is stressful and scary. That is why it is important to reach out for these supports as you cannot deal with this disease alone. Please keep us updated, this forum offers a good source of emotional support and practical advice. We get it and many of us have travelled the road you are on.

DrinaJGB

We have been at this for over 11 years now. My DH has been evaluated many times by a neuropsychologist to reveal diagnosis of mild dementia. He has another appointment for another evaluation in November--that is the earliest one I could get for him. His neurologist ordered the evaluation as you have to be referred. He also has ordered another MRI since the last one was done in 2011.The reason for these tests are due to his not doing as well as in the past on his mini mental exam in the neurologist's office last month. The NP will reveal a diagnosis after assessment is done which will give you some guideline as to treatment options and future planning.

jfkoc

You can easily make up a reason for a Dr's appointment....medicare requirement, insurance requirement. You can even make a mock up letter.

Jo C.

Agree that even with using a fiblet to get him to the doctor would serve you best.  He is already having delusions, those rigid false beliefs; that puts him solidly into being a bit farther into his disease status than you may realize AND he may not have Alhzheimer's, but a different dementia. What comes to mind is a behavioral variant of FrontoTemporal Dementia.  FTD is different in that the memory does not become so deeply compromised until the later stages, but they often exhibit a high degree of irritability, agitation, delusions, even some paranoia; the behaviors are often quite florid and over the moon. 

There are medications to assist with what is happening, and that will make his quality of life much better as well as yours. 

One could blame needing some sort of insurance or Medicare requirement to have a basic exam to continue coverage as an exam was not done when the insurance was signed up for.  AND that the exam is for BOTH of you.  Jfkoc has a good idea, you can even make up a mock letter demanding that be done.

Then . . . .a few working days prior to the doctor's appt., send him/her a detailed memo explaining in detail all the changes in cognition, function and behavior and mark it "Confidential."  Call and let the staff know the memo is coming and that it is time sensitive to the date of the appt. and to get it on the doctor's desk asap.

I did this each time there was a doctor's appt. as I could never have talked about my Loved One,  (LO), while my LO was present.  I also carried a copy in my purse and excused myself from my LO to, "use the bathroom." What I was doing was checking with the staff to ask the doctor if he had read the memo . . . if so, good. If not, I had the extra copy to be read prior to entering the exam room.

NOTE:  If you can get him to a dementia specialist that would be best.   The specialist such as a good Neurologist who sees dementia patients as a routine part of his/her practice is the initial key.  Neuro is best at making an accurate diagnosis for type of dementia and that is critically important.  There are many different types of dementia of which Alz's is only one.  It makes a difference as meds for one type can be contraindicated in another and make things even worse.

If he will not see a doctor, then one has to wait for the other shoe to drop and the first contact may be through an ER. 

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 service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive, have good information and can often assist us with our problem solving.

We are all here in support of one another and that now includes you too.  Let us know how you are doing, we truly do care.

J.

Donr

When you go out for the day or shopping you might try calling him on your cell phone and letting him know the time you will be home and ask him how things are going. It works on my wife.

Pam BH

Tamela, many similarities with our DH. He's 16 years older, is very paranoid, many delusions, including accusing me of affairs. The first year after diagnosis was horrible for me as I'm sure it is for you. I was in panic mode. It wasn't until I found this forum and learned my situation was pretty normal, although all are different, that I finally was able to accept our circumstances (might as well - can't change it) and learn from others on the forum wonderful tips. I also was able to change my outlook when the accusations were flying that I'm grateful he loves me enough to not want to lose me and know the affair delusions stem from his fear and not from a lack of love or trust. (Thank you, Lady Texan, for your gratefulness philosophy.) It's been a year since that particular delusion started and with medication it's still there but not nearly as intense. The other delusions I can deal with and validate them and even apply some humor about them to cope. This year is focused on making life bearable for both of us and enjoy the good days when they occur. Hang in there. It's a horrible disease. Getting as much information as you can will help you make plans for the future and how to cope. Big hug your way!