young onset

SheaRx

My 55 year old husband was diagnosed with Alzheimer's 11/2023. We have will be married 31 years this April with 3 children and 7 grandchildren. Previous we had were separated for 2 years due to him checking out of life with everyone. We got back together last March 2023 for one last try. His behaviors were more bizarre, and I had stopped and look at him clinically and not as a wife. I observed countless symptoms of early onset Alzheimer's. His sister was diagnosed 5 years ago at 49. Her decline has been rapid (unable to work or drive). He was reluctant to any testing because he felt this could not be happening to him and everyone around him was just exaggerating his deficits. I started him on the fast track of getting him treatment and support. He had to have 2 MRI's and 2 neuro/cognitive workups for him to believe his diagnosis. Looking back my husband started with his symptoms decades ago but we just accepted as him being quirky, dealing with PTSD for the war and effects of drinking. He retired from law enforcement 6 years and now works for a local aviation company. The MD stated he can still work and drive for now. He is being evaluated every 2 months and more regularly if/when symptoms progress. I am now trying to coordinate his VA doctors, neurologists, psychiatrist and PCP health care professional to be on the same accord when treating him. I also do not want him to be overly medicated. I know that we are blessed for the diagnosis and the positive feedback we have gotten. I have read that it takes years to be diagnosed. I have worked in the medical field for 20+ years, raised children with rare syndromes/disease and special needs, and seen some pretty tuff stuff on the job, I was angry with my husband for so long for checking out on us. Now I feel guilty and ashamed. I would have picked up on these symptoms with any patient but could not see it in my own husband. Now I must learn how to separate his illness from him. It is a struggle and choice everyday that I choose to do. I choose to close and lock doors behind him, turn off lights, turn off the stove, repeat things constantly, track his whereabout thru an app and show him dignity and love when he cannot do the same. Just feeling lost and overwhelmed.

Was not which category to put this in, sorry if it is a repeat

harshedbuzz

@SheaRx

Hi and welcome. I am sorry for your reason to be here but happy you found this place. And yes, this is a good place for you to be.

I'm not a spouse, but I really struggled with letting go of anger around dad's behavior. This free resource was useful for both me and mom to embrace the behavior as symptomatic and be more compassionate in the face of difficult behavior.

My parents went through a rough patch that was, in retrospect, the result of his dementia. It took some time for mom to reconcile that, but she's since worked through it and is able to understand it for what it was.

Understanding the Dementia Experience (smashwords.com)

HB

upstateAnn

Good attitude. I also accept and love my husband, but I lose it still sometimes. This morning he sneered at me and called me a Liar when I insisted he bathe. (It had been four days). This triggers me. We talked it out but I was left ashamed and exhausted by my outburst. It happens. . I would, however, question letting him drive. Would you put your grandkids in the back seat alone with him if he were behind the wheel? It is, quite frankly, the most risky activity he does.

upstateAnn

SheaRx

Good morning upstate Anne,

My husband only drives himself. The MD states that his sense of direction has not eluded him thus far and that is why he is evaluated every other month. He is being monitored closely by everyone. I would never but anyone in harm's way. I am dreading the day that his keys will have to be taken because driving has been such a large part of his life, and he enjoys it. Please no judgement, I am trying the best I can everyday.

upstateAnn

No judgement, just sharing. My husband luckily gave up his keys because he felt off driving. Later we learned that dementia affects perception.. We noticed he knew where he was going, but was having trouble with lines, etc. I mention this because, if he gets into an accident, after being diagnosed , the liability implications for you and your husband are serious, My dad, who had dementia took out three cars in a parking lot. While still cleared to drive. You might consider having him tested. That is what several people in my support group have done. Some of their dear ones have surrendered licenses. Others were cleared to drive.

charley0419

There’s someone on her who’s DH was dr was driving got into serious accident now has legal issues

ButterflyWings

@SheaRx no judgement at all. We are all here in the same leaky boat and sharing cautions freely, to help fellow travelers in this terrible storm called dementia.

Driving is a huge concern. It really is. You will keep hearing this here because it is true and we are here to help each other. Please don't take it personally, but do take it to heart. I disappeared the keys without discussing it with DH when the time came, and it comes earlier in disease progression than you may imagine. Several thousand pounds of heavy metal traveling at speeds is indeed the most risky thing anyone with impaired judgement can do. Not getting lost is the least of your worries if he is out driving. Especially alone. He is not on the road alone. That is the point. Children and pets and disabled persons may be in his path. Another driver could run a light or cut him off. What would he do? It is not worth it, and unfortunately as the sane one, you are in charge now.

There is so much misunderstanding of the many ways the brain can fail depending on type of dementia, which lobe of the brain is impacted by this progressive brain damage, and many other things. Even the dr's often underestimate the danger of how vision, mood, spatial awareness, sense of time, reflexes, distraction and so much more can glitch with no notice, and tragic consequences if someone is still driving.

I know you are probably feeling like I did...drinking from the fire hose and not sure which urgent issue to try and manage first to get a handle on this monster disease and how to survive it while helping your LO stay safe and comfortable (physically), even when "happy" is no longer possible. Dementia is a thief of the highest order. I'm sorry you are eligible for our not-so-little club. But I wish you the best possible path in this storm.

SheaRx

Thank you for the insight. Working full time and taking on this way of life just hit me after Christmas. I really need to have some honest conversations with myself, husband, family and doctors. I am still thinking in the realm of thinking that he will let me know or I will be able to detect when things change. There is still so much I do not know and am learning everyday. Is there a check list of things to do for your loved one with a new diagnosis, for yourself, the family, financially, legally, etc? I know about the POA medically and financially and have started to the steps for that. now know about the STD/LTD so that if he gets fired, he can still have his pension (currently he has cost the company @ 300k with his mistakes thus far). My learning curve is going to steep and just trying to keep up.

Thank you for the gentle lead and I am appreciating the wisdom, I needed that today

ButterflyWings

Just something else to think about (sorry) - but as he is former military and retired law enforcement, if there are firearms and other things in the house that can be weaponized it is urgent to remove those now. Like yesterday. Again, don't ask, don't tell was the best method in our situation.

Please don't delay on the guns and driving, for obvious reasons. No judgement. Just safety proofing our lives before the unthinkable happens, like we childproof as a preventative measure, not after something dire happens. It is my understanding that EO can progress very quickly, so as hard as all this is, good for you for seeking answers and solutions now.

Ed1937

Shea, welcome to the forum, but I wish you had no use for it.

You have some top notch replies above. Both the weapons and the driving are very important things to consider. You will not be judged here, but you will be given things to think about. And you will get much more information here than you will from the medical field unless they have been thickly involved in dementia related problems.

HollyBerry

Hello and welcome. I've learned so much from the people here, ten thousand times more than I've learned from any other source.

Quick comment re the driving - I think there's a lot of muscle memory involved, and that's why PWD seem ok to drive when they're not. My partner can operate the car (well, she could last time she was allowed to try), but has very poor judgement about traffic decisions and really messed up in a fender bender last winter, which took almost a year to resolve with the insurance company and DMV.

I wish there was a checklist or cheat sheet, but there isn't. Do the financial stuff first. Whose name is on the car registrations, deed to the house, insurance? Subtopic related to that: if you need to make any big home repairs or expenses, don't wait; yes, you need money for care for your husband but you also need a house, a car, and a life for yourself. Find a health care provider you can work with, who is knowledgeable about the disease and the medications. Really dig into what community resources are available, in case things progress quickly. Use the time you have when you can be home in your house, with your husband out doing other things, to go through every inch of your house, every drawer, every paper, and think forward -- important documents put away off the property, all old meds, etc removed, weapons and tools that could be used as weapons.

Mentally, you have to start the dance between pretending you are asking their opinions on things and giving them choices, and marching ahead and doing what you need to do. Never trust the answer to a question. Respond to the emotions and not the content of the arguments.

I started a document on my computer a couple years ago where I track changes as they happen, sometimes every few months, sometimes at other intervals. It's been super helpful when I need to communicate with extended family or providers. I can say, "the last time she cooked breakfast was in July. She no longer knows how to use microwave or the toaster, as of December. She makes coffee once in a while but always makes the same mistake in putting the basket in the machine. She can feed the cats but can't follow a simple whiteboard guide to feed the horses as of January." There are a couple different descriptions of progression from various sources that gave me some things to look for and ways to measure change.

Someone here told me, essentially, don't quit your day job. That totally changed my outlook on things. My retirement age will probably coincide with my partner's need for MC. I'm planning to keep working through that transition, both for the money but also for the mental health aspects of having a job I like and an actual life.

Have a serious sitdown conversation with your kids soon. Hugs to all of you.

MN Chickadee

An elderly man in my state (who I suspect had dementia based on the circumstances) recently struck a pedestrian who is currently fighting for his life in the hospital. The driver forgot to turn on his headlights a d was arrested and spent the night in jail. If you are closing doors and turning off the stove behind your DH I can't imagine he is safe behind the wheel. A PWD is ok driving until one day they suddenly aren't and you may not find out until a tragedy happens. Driving is not something to take lightly or be a day too late on. It's tough, I know. Many PWD fight it and loved ones have to use therapeutic fibs. The car has gone for repairs etc. I'm sorry for what you are going through, it is so unfair.

trottingalong

I’m sorry you are here. This community has been a real blessing for me. The information I have gleaned from posts and comments are far more informative than any of my multiple online searches. I still get overwhelmed, but knowledge helps immensely. On the driving. It’s impossible to monitor. A couple of years ago when I was suspecting something was not right with DH, he drove his truck a mile down the road to the store. He comes walking in the house and told me he couldn’t figure out how to roll the window up. But he was driving fine. He doesn’t drive any more

BPS

I have found effect on vision and perception of things they see is much more then I realized and really effects driving. My wife has had her eyes tested and she did good in that situation but her field of vision is smaller, her depth perception is off and sometimes what she sees is misinterpreted by the brain. All these thing can make driving dangerous. It all came on slowly so I don't know at what stage any of these things started but I should have stopped her from driving before I did. She had to accidents close together, luckily they were both minor, but it could have been much worse.

ButterflyWings

@SheaRx you asked about a list -

• Below is a helpful link from the AlzConnected Resources tab with a few other things we all have to think about and "triage" for safety at home, emergency preparedness, travel (if you choose to while he still can (think bucket list)), and more.
• Heads up, some of their suggestions to negotiate stopping driving would not have worked for me since DH was adamantly opposed to discussing, compromising, agreeing to stop and was ready to change his excellent dementia Dr if they brought it up again. That all had to happen behind his back.
• @HollyBerry mentioned some things that are important to think about e.g. wish I'd known to hide important papers offsite sooner, because some things went missing before I secured the rest.
• And the article that @harshedbuzz posted on Understanding Dementia (at the top of this thread). It is priceless. And gave me so much perspective to not be angry or impatient with my LO or myself.
• Also, if you have not already gotten the VA started on granting your DH "Catastrophically Disabled" status the social worker should be able to help with that. It can unlock more resources and support but not everyone at the VA knows about it =|. I spent almost a year on that merry-go-round but got it done. It took 30-60 days for some others here. The main benefit has been 15 (now 40) hrs/week of home aide helpers. That's a whole other post lol. But after maybe 2 years of us being homebound (he went from wandering, to refusing to leave the house. Ever. aka I couldn't either.) So although a steady aide has been hard to find, this benefit helps a lot.
• The Alz free, 24/7 helpline can also assist you with a Care Counselor to discuss anything at any time.

At such a young age and with this being new as of December, I can imagine you must feel like you are in the twilight zone right now. We have pretty much all been there, for sure. Right there with you now, in fact. Five years post-diagnosis and I'm still in a state of shock some days, as Alz is such a moving target with the progression and no rhyme or reason for what order or speed DH's decline will happen. With your DH's PTSD it probably leaves even more on your shoulders, and we just encourage each other to find little ways to keep putting yourself first too. Every day, somehow, even if just for a few minutes. 💗

Please know we are here for each other and are going through the fire, too. Sorry to be longwinded. As always it helps to post, read, take what you like and leave the rest. Sending virtual hugs your way. You can do this.

https://www.alz.org/help-support/caregiving/safety

HollyBerry

I remembered something else: you need his passwords and logins for any old laptops or devices that may have anything useful on them. A friend was able to enlist her husband's best friend in getting him to help with that task while he still could; he was resistant to her ("quit nagging!") but the guy friend saying, "you've done so much to set her up for a good retirement, you're such a great husband, do it for her." Whatever it takes.

CStrope

My DH completely thought he could still drive, and his dr refused to be the one to make him stop. So I traded in our car for a new one that had push button start. I knew he wouldn't be able to figure out how to use the new car so that was an easy way to keep him from driving!

Pat6177

https://alzconnected.org/discussion/comment/196705#Comment_196705

FWIW Early on, I was not always able to detect when things changed. Before DH was diagnosed, I was putting dinner on the table and put out dinner rolls. Now we don’t often have rolls with dinner. DH picked up the roll and said “what do I do with this? Oh, I’ll just watch and see what you do.” What?!? He was so nonchalant and I was shocked and am still wondering how long he kept quiet and just watched.

In hindsight, about 1 1/2 years before my DH was diagnosed with dementia, we were on a road trip. I did most of the driving but DH did several segments. We had to go around a rotary. He started to cut straight across. Thank goodness, there was no traffic at the rotary at the time. Then on the interstate, there was a cardboard box or something in his lane. He couldn’t figure out what to do so just drove over it. There was no one behind him, he could have easily moved over to the left lane to avoid hitting it.

I was so uneducated about dementia in the beginning. I should have stopped DH from driving at that point but just didn’t know what I didn’t know. And most of what I know now, I learned from this site. I am so grateful to all the people on this site.

As for checklists, check out the Groups button up on the top banner. There’s a group for newcomers there. A couple of members have been posting info for newcomers.

Hang in there. One foot in front of the other and it will get done.

LindaLouise

https://alzconnected.org/discussion/comment/197034#Comment_197034

I, too, was so unaware at the beginning. I noticed lapses, but attributed them to the pandemic and having to learn things like Zoom, etc. When we would have the young grandkids over, they started saying things like, "Grandad, why don't you help Gramma?" as they saw me running around trying to get dinner ready and manage all the kid things while he just sat there. I think that was my tip off/gut punch that things were very different. He was always the most helpful hubby and devoted grandad, so this was a big shift. I, also, have learned so much here and am so grateful for everyone who posts and comments. It all helps. Your comment about one foot in front of the other was perfect! Looking at all I have to do, and all that lies ahead can feel beyond overwhelming and terrifying, but one step at a time... that I can do and somehow remember to breathe. Thank you

ShaneA

Thank you for your support. My DW will be 49 in June and she is very upset at me because I had to take the keys away over 1.5 years ago. I understand it was her last shred of independence, however, it just became too much. I have been working from home for the last few months and it is extremely difficult and lonely after I put her to sleep at 9:00 pm. She is so sweet and I love her more than I did when we got married almost 27 years ago. I have been through this 18 years ago with her sweet mother and I find myself ‘numb’ because of the caregiving and know what is coming at me with taking care of her. Thank you for sharing your heart-felt thoughts, it helps me feel that I am not alone in this.