New and frightened

jscott

My beautiful wife was diagnosed with dementia, likely Alzheimer's last week, she is 69 and I am 71. Two and a half years ago she didn't do well on a MOCA and we were told it was likely dementia but didn't do any additional testing other than the MRI and other blood work. She finally did some comprehensive testing and the results were given to us last week. She is doing very well and still independent. We have been married for 47 years and she is the love of my life. I'm terribly frightened about the future and losing the one I love. I know it is progressive and I'm told it can progress rather slowly. She doesn't seem to be concerned and really doesn't accept the diagnosis which is fine with me as I only want her happy and content. But, I'm a wreck not knowing what to expect or how I will emotionally deal with seeing her slide down this path. I love her with all my heart. I know I need to get support and counseling to be strong for her. How does one deal with the reality of this diagnosis and keep moving forward with a positive attitude? We are people of faith and I'm leaning heavily on my faith as well as our 43 year old twin sons who are wonderful but I know they are very busy with their families and work. But, they are here and very supportive. How do I regain my footing? What should I expect? We did estate planning a few years ago and have a DPOA and Health Care Directive in place. We are also blessed with having financial resources to deal with pretty much whatever is needed. That is all secondary to my fear of what is coming in the future and watching my precious wife go through this. I want to be strong and there for her now and always.

LJCHR

I am so sorry for your diagnosis. Coming here is one of the first steps for your journey. I joined in March of this year and the advice you get here is from experience and from caregivers like us.

We are entering the 3rd year since diagnosis - and I continue to educate myself about dementia/Alzheimer's. I have kept my DH in a routine and that seems to benefit us both. The progression for us has been slow but steady.

It is a horrible disease, but somehow you will find inner strength to get up each day and face what's ahead of you and your DW.

Denise1847

Hi JScott,

I am so sorry. You have come to the right place. The people on this forum are amazing. You are not alone. You will get experienced advice from them. Read the "36 hour day." Most of the time, people with dementia/alz don't recognize that they have a problem. It isn't denial, they really are capable of seeing it.

Dio

Please know that, in time, acceptance will happen, and it should help ease the angst, although the pain will never be gone. You'll find lots of support here. You'll hear many similar stories and struggles from others. We've been where you are. We know. We care. Take it one day at a time. As Denise suggested, do read the "36 Hour Day" to get started. Get all your DPOA and Healthcare directives and Trust/Will in order. Consult a CELA if need be.

Joe C.

Jscott, Welcome but I’m sorry you needed to seek out our community. This is a great site with lots of experienced caregivers willing to share their experience. I have also found being part of an in person support group very helpful. They are a great way to connect with other caregivers in your area and to learn about local resources. You can search for support group on the ALZ. Assoc. main page. I have also found counseling has been very helpful for me as I navigate this journey. I wish you and your wife the best.

jscott

Thank you for the encouragement and support. I just ordered The 36 Hour Day

jfkoc

Hi js....

You will be OK.

While this a hard illness you have all of us here to travel alongside you. Use us. Lean on us. We understand and we know stuff.

You are going to have a great influence on just how bumpy and curvy your road is going to be. Education is the key and caregiver 101 is not a semester course.

You will learn as you go along but somethings are constant. You must learn to live within the four corners of your wife's page and you must learn to listen to her...not just the words but the emotion that prompts them.

You are going to mess up, you are going to lose it and there will be times that running away looks like a solution. You will be sad with the slow loss of your wife and that loss will cause painful grief at times. You will be frustrate4d because the ongoing problems are not fixable. You will learn not to reason or to argue.

.I look forward to getting to know you but that said I wish you did not need to be here.

Judith

trottingalong

https://alzconnected.org/discussion/66832/new-and-frightened

My DH has progressed very slowly over the past 6 years. He still functions daily, makes me laugh often and is semi independent. Everyone has their own individual journey. We chose in the beginning to try not to dwell on the what ifs or what will we do. As his short term memory is disappearing, it makes me sad for him and somewhat concerning. My advice would be to enjoy every day you can. Try not to waste them away by worrying or being hyper vigilant with regard to changes. I’m happy I found this group, they have given me tools for understanding this disease and how to remain calm and deal with changes as they come.

Ed1937

Jscott, welcome to the forum, but wish you didn't need it. You will get a lot of support and understanding here. If you have any questions, please ask. You will get answers and suggestions to help you.

I know you have seen a lawyer for estate planning, but you really need to see a CELA (certified elder law attorney) early in the disease to make sure you have all bases covered. They can protect a lot of assets for you, as well as make amendments to documents you already have. Your wife will no longer be able to act on your behalf for medical or financial decisions. So you need to have your POA fixed to allow someone other than your wife to act on your behalf. A CELA can take care of whatever you need. Don't drag your feet seeing one. If you wait too long, you will surely pay a price.

Your wife likely has anosognosia, a very common condition for people with dementia. Why your loved one doesn't believe they have dementia- It's NOT denial. 

Acceptance is the key to making things a little easier. Once you have fully accepted the disease she has, it will be just a little easier. But it's not easy to do.

loveskitties

One of the biggest learning hurdles of this disease is to recognize and accept that their world is the one you live in...that means not correcting errors of memory, watching out for safety issues as if you had a child at home, letting things slide unless it can cause harm.

All this is very difficult, because as adults we are "programmed" to correct.

Keeping a diary of "different" behaviors you notice will help not only you but also her doctors. It will help you to recognize things to watch out for and give the doctors a good picture of what life is like outside their office.

Wishing you and your wife an easy journey.

CindyBum

I am so very sorry you are now a member of this club, but we are here for you, know how hard it is, and will support you.

On regaining your balance. I am a year into it now and can say it has been a repeat process of new balance being gained as I meet each change that breaks my heart. My SO is still relatively independent, but the progression has made it obvious to her now that she is on this path. I still cry, but not nearly as much as I did in the beginning. After my own 57 years as a "tough it out and get over it" midwesterner, I got a therapist and now have a small dose of an antidepressant to help me through the real grieving that I, and now you and all of us, are doing while we also throw all our love on the loves of our lives. I needed it all to straighten my spine a bit so I can grieve and care for my SO with all that I have. I also have some great friends that listen and let me cry to them, so I don't do it in front of my love.

Time will help you balance, but I don't think the grief can be stopped. You also have your faith and your family. They will be an incredible strength to you, even if they can't take all the pain away.

Vitruvius

My DW of 49 years, is now 72 and is in very last stages of her horrible journey. I’ll spare you the depressing details but you may see them in my other posts. Here is my advice, most have noted these already. Some suggestions are for issues that may not come up for many years if at all, but dementia is unpredictable and at least having considered the future possibilities may reduce future stress. I don’t mean to freak you out with these, if I do I deeply apologize.

• Start a journal, annotate it very often. At some point your DW will require medication, this information can help doctors determine which medication would be most appropriate for the behaviors you are observing. Then document any reactions to the medications as generally they will need to be increased in dosage over time. A journal will also help you monitor her progression.
• Live in her world, as loveskitties has described. Support even outlandish notions, as long as they’re not harmful.
• Be ready for some gut punches and try not to let her see any negative reactions from you. My DW developed delusions and hallucinations, this is quite common but not universal. For many of us there came a time when our LO did not recognize who we were. I was crushed the first time my DW failed to recognize me as her husband. For several years she recognized me only as someone she was comfortable with but she thought I was a) one of my brothers [I have no brothers], b) a cousin, c) the nice man who takes care of her, d) … well you get the idea. I had to take my wedding ring off because she would see it and ask who my wife was, and if I was married, why was I here with her? Trying to convince her of who I was only made her confused and angry, I stopped that very quickly.
• You will need some “me” time. Investigate local day programs for people with dementia. My DW attended a wonderful program that provided her with failure free socializing and activities. It also gave me a welcome break from caregiving.
• Think about whether you will try to keep her home until the end, or whether placement would ever be considered. I had to place my DW eventually, her care became very physically challenging as her physical condition deteriorated, not to mention the mental strain of caregiving 24/7/365. If you decide that placement may be necessary, investigate options well in advance, the best places can have long wait lists. I put a deposit on my favorite place and passed on rooms that came up until I finally had to place her.
• Enjoy every moment of your time with your DW, take lots of photos, consider some videos with sound. Do bucket list things as you can, but keep them simple and easy going. PWD often don’t do well with change, they thrive on routine and reassurance. For example, be ready to shorten a trip and go home if it seems too stressful for her.
• You will likely feel grief, guilt, stress. I sorry I am not able to provide many suggestions on how to mitigate them. I had to place my DW in no small part because I became quite ill due to the stress of caregiving and I was a very healthy, active, fit guy. Some here suggest counseling, I haven’t tried that, I’m just a do-it-yourself kind of guy I guess, not that that’s working so well.

Hopefully this was helpful and not frightening. I too love my DW very deeply and understand the pain the disease can cause. I wish you strength in the coming years.

M1

I add my welcome too jscott and know exactly how you feel. It is a true blessing to have a happy marriage, and you will find the strength, out of love, to provide her safe passage. We lean on each other here to help make that possible. My heart goes out to the many spouses who gut it out and stand by their partners without having had that preexisting happiness.

It is wrenching when you have to turn to others for support when you're used to seeking it from her-one of many changes you will face. But as others have said, you may have good years yet; i knew my partner was developing dementia in 2014 but we had at least five years before it got really bad. These early days are bucket list time.

Look up anosognosia btw, she probably has it-it's a feature of the disease that prevents her from seeing her deficits.

Joining this forum has kept me sane over the last three years. Hope it helps you too.

hiya

https://alzconnected.org/discussion/comment/186430#Comment_186430

Can you explain more about how the forgetting process took place? Stage? Timeline? My husband has started this during sundowners. It’s tough. Thank you

jscott

Thank you all for the counsel. I’m don’t know much yet but it helps to have counsel and encouragement from others who know how it feels. Right now, things are good and I know I must treasure these times and not let my fear of the unknown steel the good that is now. I’m going to try to keep that in mind as much as I am able. I also plan to have our trust and estate documents reviewed and updated. I don’t know any CELA but my closest friend is a judge and I’ll ask him for a referral. May God bless you for your willingness to counsel a new person searching for a path.

Pat6177

You’ve already gotten good advice here. All I have to offer is the recommendation to keep reading the posts on this forum. Most of what I know about dementia, I learned on this forum. And when certain things have happened, I wasn’t caught off guard because I had read about it here. It’s why I so appreciate all the folks that take the time to post.

ButterflyWings

https://www.smashwords.com/books/view/210580

Welcome to the club none of us wants to join. But we understand too well what you are feeling and facing, and we help each other by sharing our experiences, tips, and strength to endure while helping our LOs.

This article is one of the best resources to understand dementia and navigate the challenges with compassion. Wishing you all the best in the worst circumstances, which dementia really truly is. Nasty family of diseases, but there are many of us here who find ways to focus on the positives every day, of which there are always many with the one you love. Even if small gems and gifts, they mean so much.

I will say, we took the advice that if there is anything you always wanted to do, do it while you can. Travel? Go. Take a month off and just staycation together? It will be easier now than later, or at least your LO will be more present now than later. Good luck to you. We are in late stage 6 of 7. And I still love my DH dearly, despite the stranger he has been, often, in the 5+ years since diagnosis. He is still "in there", and I am here for him.

M1

Jscott, sadly remember that your own documents likely need to be updated to name someone besides your wife as your poa,and executor, as she cannot serve. I did this in private as my partner would have been crushed in those early days.

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boxsterman

https://alzconnected.org/discussion/66832/new-and-frightened

As I read your post, it could have been me writing. I am also posting for the first time. My wife does not have Alzheimer's, but she is suffering from dementia. I look forward, like you, to hearing from others who "know" and learning from them, as well as contributing as I become more educated on the subject.