Can I ramble? We just started this heartbreaking journey...

LauraCD

...and it is already hard. The diagnosis was about a month ago and it shattered us though we both knew something was going on with DH's mind for the past three years. Denial on both our parts was very powerful;. Now there's a name for it. There is an explanation for some of the behaviors and the memory problems. It's Alzheimer's and so little is known about it. So now what? Im ready to do the eldercare planning (which we fought about and now he agrees) and I'm writing things down and I'm trying not to argue about the things that in the long run aren't important. I can find another way to handle that for now. But, I'm just at the beginning and worried about my own abilities to deal with this well.

For example, and of course I realize I've yet to experience the worst of this, there are two activities that DH always loved, prided himself on and was able to take for granted for all these many many years: Numbers, finances, money - he was a veritable genius when it came to numbers. He took care of all of us financially for lo' these thirty years. He inhales with pride with the home we live in and how well our kids our doing (putting all through college and more). And driving his car. He has always loved his car. He was a BMW lover before it became popular. When I met him he had one of those very squared ones from some vintage year. And, of course he has one now. What level of loss will he experience when he can no longer drive? When someone tells him he can no longer drive.

At the moment I am writing this he is reading an article written by a son about his father who suffered from Alzheimer's. He is crying. The article brings no hope. It does not end well. Oh how I wish I can tell him, I can give him, something comforting. He, I, we -- is, am, are -- trying to take one day at a time. That is not always possible. The full reality of what is happening is simply unavoidable.

When he wants to share some news about some CBT product that is supposed to help with Alzheimer's being promoted by some "news" woman that was a regular on the Dr. Oz show he is surprised and disappointed by my cynicism and it is like I am striking him down. I want to find treatments, clinical trials, anything that might change anything that is going on... but the reality of this is there is nothing now. Whatever may be is being worked on is and past our present. Past our promise. Past our time.

As I said, I'm just rambling. I'm sure most here have been though much worse and I admire your courage and fortitude and commitment. So help me I hope to have the same. I must. There is no alternative.

jfkoc

Hi Laura,

Of course you can ramble and thank you for breaking up your ramble into paragraphs!

While Alzheimers is a one way disease please do not think all journeys are the same in difficulty. There are many who are doing "well" and find no need to be posting here. So please, do not borrow trouble.

That said, I do not think this is a cake walk for anyone. Having a spouse who is going to need more and more care is difficult but you have many tools available that will make things easier.

First of all pleas be certain that the diagnosis process followed proper protocol. You must be certain that all treatable causes are eliminated..

Next, while much is not known about Alzheimer's a lot is known about how to be helpful to someone diagnosed with it. Meds, supplements etc. Just research so that no harm is done. All things like nuitrition and exercise can only help your husband and they likely will benefit you too.

What I find most interesting is that there have been some solid studies that indicate that non-medical treatment can be as helpful as drugs. To earn what helps you will immerse yourself in dementia "101". Much of that course you can pick up here...the rest online and in books. It is a learn as you go course and the more effort you put into your caregiving the easier the journey.

We are always here to share what helps as well as to share medical and financial information....always here to listen.

You are not alone...you can do this!!!!

Judith

Iris L.

Welcome Laura. I am a patient with a diagnosis of cognitive impairment not otherwise specified and I have been on these boards for over thirteen years. At one time I was told that I had to accept that I had dementia, and I fell into a deep depression. I only came out of the deep depression after communicating with my fellow members here and after making some decisions. I learned so much from my fellows, too much to state here. But one important point is that I would be able to take my future into my own hands. And I had to think about what I still had over what I had lost.

Most caregivers may have a different view. I believe this is because the majority of PWDs have anosognosia, and the caregivers are essentially on their journey alone. If your DH does not have anosognosia, there is time for you both to make decisions and to carry out activities. If your DH can use the computer, he is welcome to post on the "I Have Alzheimer's" board for patients.

Iris

loveskitties

Welcome Laura.

To address one of your comments about being critical of "emerging" supplements and the like: Instead of shooting it down outright, tell him you will put it on a list to check with his doctor about its effectiveness. That gets you in his corner about checking out new options and puts it on a "possible" list for him.

M1

Welcome to the forum. Driving and finances are important to a lot of people, and you are right, they can be pushbutton issues. If you have a banker and/or financial advisor you are familiar with personally, I would tell them sooner rather than later--they may have a way of flagging your accounts internally so that his transactions are monitored. I eventually convinced my partner to let me take over all the billpaying by putting everything I could on autopay, and by telling her that I was functioning as her executive assistant---but that worked, in part, because she was never very computer savvy. Very financially savvy, but not computer savvy. Until she wasn't--she used to call her investment advisor and tell him she wanted to move everything to gold. Fortunately he knew me well and would let me know when these conversations occured, and made sure that I had signed powers of attorney for all of her investment accounts. The driving remained a big issue, despite being told by her doctor that she couldn't/shouldn't. I had to hide keys and disable batteries. You should have that discussion with his doctors sooner rather than later, and in some states you can anonymously report someone to the DMV.

This forum has been a big help to me, I hope it will be for you, too. Sorry you are having to face this.

Denise1847

Dear Laura,

Please feel free to ramble here any time. There is lots of information out there about the benefits of certain diets, exercise and brain exercises to keep the brain functioning as well as can be expected. My husband deals with his dementia by stating that it is just his age. It is great that your hubby is willing to try things, just be cautious about some supplements. Hopefully, he will not go into denial and it will make it less difficult when he has to give up driving as some will actually agree to stop driving. Whatever you both have been putting off (traveling was our thing), plan to do it while he is early into the disease. If he is willing, get into a support group for both of you. Have him teach you everything about the things he does now, and write these things down. I had my hubby go through the house to show me things like how to turn the external water off. You will need to know all of this later.

What is currently working for me is: taking one day at a time, praying, not looking at the past and grieving about the loss, not looking at what we had planned to do or what others are able to do that we can no longer do. This type of thinking just takes me down and depresses me.

Please continue to ramble and be comforted to know that you are among friends who share in your journey and don't judge.

Resources: the book "the 36 hour day" and Tepa Snow

SDianeL

LauraCD - My DH was diagnosed with vascular dementia 2 years ago. After the 3 hour testing the Neuro-Psyche doctor said no driving. We were moving into a small apartment and I used that as the right time to tell him. My husband was a "car guy" although we didn't have a fancy car we did have a luxury RV. He was devastated. I explained to him that the doctor said that once they put the diagnosis in his medical records if he were in an accident, even if it wasn't his fault, we could be sued and lose everything. So he pouted for a few days and gave me the keys. I recently traded for a brand new car and he was so sad he couldn't even drive it. He's been upset ever since. Read the Family Guide on his website. I just posted the link today in case people missed it. I described this journey to my family & friends as mentally & physically exhausting and terrifying. I am a strong person but some days I don't think I can do it anymore. Then I remember my Mom who was the strongest woman ever say, "Just pick up one foot and put it in front of the other" and I do for awhile.

SDianeL

SDianeL

forgot a few things. I also read that CBD might help and ask my DH PCP. She said no problem. I give him 2 CBD gummies each day. One in the morning & one in the evening. They seem to calm him and make him sleep better. She said take them an hour before or after his other medications. I order the gummies from a company called FAB CBD. I have no financial interest in their company but am pleased with their service. Always ask the doctor before adding any supplements. His neurologist also suggested B-12 although she wasn't sure it would help. I can't see any difference. He also takes a multi vitamin & D3 due to his diabetes.

jfkoc

I think Dr's are becoming much more comfortable with "gummies". I personally would use them rather than a drug and my Dr agrees..

Gig Harbor

Welcome Laura,

I can give you a couple of suggestions as to what to say. When my husband would point out ads for products that “help or cure” dementia I would tell him that if they really worked all doctors would prescribe them. I told him the doctors would like nothing better than to be able to cure him. I also made it a point to tell him that he was so lucky not to have a painful or physically disabling disease. I said that in our age group everybody has something and his was memory issues. I told him that I could handle the day to day remembering but that he was lucky that he could walk easily, enjoy drives with me as the chauffeur and sleep well at night. That seemed to make him happy.

Good luck on this journey,

CStrope

I am so glad that you are able to discuss some things with him. My biggest regret is that my DH was not diagnosed early enough to do this. We never were able to discuss things like memory care, end of life, funerals, or any of the many other things I wish I understood about how he wants this journey to go. Just take a breath and know that whatever you do, every day, every month, every year, it is the right thing to do. We all do the best we can in the situation we're given.

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Crushed

My wife was a physician computer genius who did all the finances

She had to stop driving 11 year ago and stopped doing finances 12 years ago

an alzheimers patient can lose a fortune in moments with a car or a brokerage account.

And quacks have a field day with Alzheimer's

ButterflyWings

Welcome to the club no one really wants to join. It is a good group of people though - very experienced, wise, and compassionate as we navigate this roller coaster of a one-way journey. You have gotten great advice from the members, and your description reminds me of my DH. One exception, DH has anosognosia and for the duration, has been unaware that he is impaired. So, I have been in some tough spots trying to ensure our safety with someone who is super smart, used to leading, but doesn't know his reasoner is broken.

He is relatively easy now (stage 6) because *on the advice from this forum* I have never confronted nor debated anything at all with him for years, since the very first big post-diagnosis challenges arose and trying to reason with him didn't go so well. I had to become a sleuth in my own home and our lives to discover and fix his disastrous financial maneuvers, disappear the car, and exit him from a busy career that the Doc said he must leave immediately. All without his participation. Whew! For a few months he was sure I was trying to destroy everything we stood for and worked for. It was a stressful, sad, terrifying, rocky, exhausting time. I wanted to discuss with my confidante and brilliant spouse as we always had done before to plan everything, make big and small decisions together.

Then I learned the workarounds and fiblets strategy here, and it made the hard but necessary things doable with much less angst or opposition. He hasn't really known who I am consistently for a while now (ouch) but accepts me as 'his person' which is a blessing. That trust has been worth it, as the decline continued, and the physical challenges and judgement issues got bigger (as they always will with dementia progression). If I had kept trying to negotiate or reason and clash with him, we would have had a lot harder time and likely not the trust and cooperation I so appreciate now -- even though I have to do everything for us and him. There is no conflict or stress from not being on the same page at least.

The sooner YOU can get comfortable with being in charge and making all decisions, things will unfold better. So to that extent, we have more control of this crazy disease than it seems. You are the one that has to adjust, because he just cannot. For us it had to be "don't ask, don't tell" rather early as ansognosia is a complicator. Driving can kill him or others. In an instant with no warning. And the money that got diverted before I got a handle on things...well, we need it now but it is gone forever. So much I couldn't even imagine or think of, was at risk, and it was several years of fighting fires with one hand tied behind my back, while also trying to keep him from making more messes that, as Crushed says above, could bankrupt us (and did).

You can do this. We all are doing it, together. Keep posting.

Smilescountry

I am so sorry that you and your husband are going through this. I know that after my parents got over the initial shock of Dad's diagnosis they finally settled on spending as much quality time as possible together, which helps them keep things in perspective, even though it is, indeed, very difficult. My Mom also has some cognitive decline and was super good at building an excellent financial portfolio with limited resources. Unfortunately, when stocks dropped the past couple of years, her assets were in stocks that were too risky, so she lost a good bit of money. I knew that she could no longer process how to make financial adjustments, so I began working with her, asking her to show me how she handles her finances. She and Dad were getting ready to move to assisted living, so I asked if I could share her portfolio with my financial advisor. She agreed if I promised not to pay him big fees! He and I came up with a plan that was more work for me but within Mom's guidelines. He helped me to understand everything that Mom had done but could no longer articulate well. He then helped me develop a strategy that would serve my parents well without being too risky. Fortunately, there was still enough money left for us to make some good decisions regarding care. We got all that done just in time, because shortly thereafter I had to get letters for each of my parents from the doctor saying that they were not able to make major medical or financial decisions. I say all of that to suggest that there might be a very natural and agreeable way to work on the legal and financial situation with what you are facing. It sounds as if your husband might be able to give some input, but perhaps he would be willing to begin sharing the finances with you and helping you find someone who can help should your husband no longer be able to do that. Also, having a solid plan for a DPOA would be wise.

upstateAnn

These posts are so helpful. My husband’s dementia is visibly progressing, but I realize how lucky I am in many ways. My husband voluntarily stopped driving a year ago even before his diagnosis because “ it did not feel right.” I always handled our money and investments so that has not been difficult. I now am going through a list of to todos, revising wills, changing my DH power of attorney for me over to our daughter, etc. These are all essential. All this said, my heart breaks a little every day as I watch my DH fade away. I also have joined a support group and found ways to deal with his often irrational anger. What has helped enormously is finally deciding not to reason with him and just to be in charge. He hates the idea of a companion I hired to come in two afternoons a week. I said it is not up for discussion despite his anger that I “do not trust him.” This from a man who at breakfast this morning asked me when we we4 going home. (We have live$ here for decades).

I need the break to be there for my DH and for myself. A little “selfishness” is absolutely necessary although that might sound cold. No colder than facing facts and looking at MCFs in case he progresses beyond my ability to care for him or I die first or become incapacitated.