Boyfriend with early stage

LindaMay1971

I've been with my partner for 35 years although we don't live together. He had short term memory loss and recently has been very irritable. He threatened to cut off all communication and is very touchy and hard to reach. I'm finally facing that the changes may be cognitive. Fortunately we have all our POA's, wills etc in place but I'm looking at a long road here. For me, walking away is not an option. God bless you! 😘

BPS

Is his family aware of his condition and are they supportive? Since you don't live with him and he has threatened to cut off all communication it is important to have back up plus there is a time coming when he will not be able to live alone. Are you POA's durable DPOA's, and you will need to change yours to someone else because he won't be able to fulfill that duty.

JulietteBee

I was born with a genetic, life-threatening disease. Throughout my dating life, I thought boys were selfish and self-centered as they were not interested in dating or marrying a "sick chick."

When I met my husband, my then boyfriend, I told him EVERYTHING about my health and my anticipated short lifespan. I think I wanted to scare him away before he had the chance to reject me, like the others had done.

He listened. He did his own research. He ultimately decided to marry me and fulfill the "till death do you part" for whatever length of time I would have.

Based on my personal history, I believe that if I were in your situation, I would stay the course. Obviously I did not have Dementia, but when someone is ill, whether inherited or acquired, they deserve a chance at being loved.

I would suggest that IF you decide to stay, make sure not to enter into that lifelong commitment naively or with rose-colored glasses. Do not seek to alter yours/his reality. Do the research. Talk to those in the know. Seek legal counsel. Get family buy-in for caregiving needs. In other words, seek to know EXACTLY what you are entering upon.

As stated about, with this disease, short term memory is the first to go. Sadly, you may be among the first people he forgets. Think that through. Play it out in your mind. Explore your inner thoughts. Be honest with yourself! Do you see your future self? If so, how is she feeling about him and their relationship then?

Also, as the relationship changes from your being lovers & best friends, to you being his nurse & caretaker, is your future self resentful, regretful, or is she honored to have been able to care for the love of her life without the need for any gratitude or acknowledment?

I just wanted to give you a bit more food for thought. Trust your gut! I know you will make the decision that is best for YOU. Hugs and God bless!🫂🙏🏼

MAW5

https://alzconnected.org/discussion/comment/242831#Comment_242831

I have contacted his daughter who is aware of his early stage dementia and confusion at times. She is his poa but at this point he pays his own bills, sets up his own meds, able to drive still very well as I have been with him several times. He plays golf, is very active, but does get mixed up on dates. I am not responsible for his money or medications. He relies on his phone for appointments and his daughter goes with him at his dr appointments. If I didn't love this man it would be easier to walk away as I have been advised to do. I am not going into a caregiver role, still in a g/f role. If that makes sense,

MAW5

https://alzconnected.org/discussion/comment/242567#Comment_242567

MAW5

My bf is starting to have more days in-between texting me. It used to be every day or every other day, not more that 2. He didn't say anything on valentines day but he did send me a card. I got the card a couple days later since mail does take a bit living in another town. I talked to him about going several days of not hearing from him and he apologized and said he will do better. He said he thinks of me all the time, but just doesn't think to text and isn't one to call on the phone much. This is all new since a month ago. I don't know what to think. Help. I am stressed.

Goodlife2025

Hi you might try setting up a daily contact time. A quick hello and check-in. Set a plan for what you will do if he doesn't answer or call whichever you set up. Like if you don't hear from him by 5pm each day you will first wait 15 minutes, if no call then you call him. If he doesn't answer you will have his neighbor or local person check on him. This might work for awhile…. Take care of yourself this is hard.

Victoriaredux

"I talked to him about going several days of not hearing from him and he apologized and said he will do better. He said he thinks of me all the time, but just doesn't think to text and isn't one to call on the phone much. This is all new since a month ago. I don't know what to think. Help. I am stressed. "

This is normal progression sad to say. Based on my experience it will be better and more positive for you both to just take each contact as a gift and leave expectations of a normal relationship behind.

What you don't want, I'd imagine, is that your calls cause him stress and that then his DPOA/ healthcare agent requests you cease contact. He will react to events more with emotions than executive thought so moods will set the stage.

He won't be able to remember scheduled phone calls or after a while even who he is talking to most likely - even if the topic was particular to your relationship.

I view each of my phone calls with a PWD as a treat that a sudden death from a car accident or heart attack wouldn't have given me. A relationship doesn't mature or develop once dementia lands . It's just an opportunity to express love & care. And it is very sad for us left "behind".

[Is he still living alone , driving ,managing his money? If so suggest you give his daughter a heads up that you've noticed behavioral changes. If she is relying on him to self-report issues she may not be up on his progression.

It is very tempting to ask yes/no questions of a PWD on the phone and if you believe the replies miss a lot of transition. At some point , he will need money management, 24 hour oversight ,no driving etc. She needs to be aware of his changes so she can step in to keep him safe .]

Michele P

https://alzconnected.org/discussion/72969/boyfriend-with-early-stage

I am agreeing with others that you need to walk away now. His family needs to take over. This is beyond what you could ever imagine. He will revert back to a child who will need 24 hour care and if he lives that long, will not be able to communicate with you, walk, sit up, and will be bed ridden until he dies. If he doesn’t have a long term care policy and does not qualify for a Medicaid nursing home, it will be extremely costly to care for him. You will no longer be his girlfriend. Eventually, he will not know who you are. I know this is hard to read, but this is what you would be signing up for. The stress and heartache will break you in two.

Dusty217

https://alzconnected.org/discussion/comment/242831#Comment_242831

This is what I was thinking. I would stay but keep my own place. Spend time together while he still knows you. Get the daughter involved . Don't become the caretaker just be a support. If the daughter becomes involved she may need help. Respite for a few hours. There is a middle ground and I agree with Timmyd above. I am married to my person with AD. I will be the caretaker. We have been together 14 years so I hope he remembers me for a while. He has no one else and we live far from my family. We may move closer to my kids once things realy start6 to change but I'm hoping I have sometime.

MAW5

https://alzconnected.org/discussion/comment/267426#Comment_267426

His daughter is involved and talks with him once a week. She lives in another town near me about 45 minutes away, she is his POA and there are several supportive family members. He still drives and I have been with him when he drives and he drives well, he lives alone, takes care of himself, sets up his pills, etc. It is the forgetting and repeating questions, conversations and now not hearing from him as much. I really don;t know how much I can take, I have been very patient with him. It has been 2 and half years and he wasn't like this when I met him. His daughter has a tracker on his phone so she can tell when and how he drives, etc. I am just so stressed and I can't sleep well. I don't know how to tell him because he thinks he forgets because of aging. He thinks I am amazing because I can remember a lot. I am just tired.

Victoriaredux

@MAW5 This is more directed at his daughter : Sorry to be repetitive but phone calls when you've already observed 'It is the forgetting and repeating questions, conversations ' are of zero value to know what is really going on.

If he is involved in an accident and can't remember details when questioned by the police or insurance companies- even if the accident isn't his fault he could still , and probably will be held liable. Part of dementia can be vision distortions , that's why a lot of PWD's cars have sideswipe dings and dents - the brain can't process or judge distances.

She should really go and stay with him overnight for a few days to see how he really functions. Look at dates in frig, are clothes really being washed or just recycled.

I don't blame her but she probably doesn't want to step in and start to utilize the DPOA and is probably thinking you are a good backstop so she delays - and you can't step in and don't want to be hi caretaker .

Trackers on his phone just show where he is- not whether he drove thru a red light , failed to yield properly. All it does is tell her where to send the tow truck.

With Anosognosia
https://www.agingcare.com/topics/295/anosognosia

waiting for him to say ; it's time, here are car keys , move me into a 24/7 care place isn't likely to happen

As for you, you don't have the powers or obligation to take over his care. It is heartbreaking to watch someone you love change, the type of relationship you had is over . He won't be able to satisfy your normal emotional needs - his brain is decaying and lack of empathy + memory issues- he just doesn't have the gear for that anymore.

I'd let the daughter know what you've observed and let her know she needs to evaluate and ramp up oversight.

I'm sorry , no one comes out of Dementia Land intact.

Maru

https://alzconnected.org/discussion/72969/boyfriend-with-early-stage

As others have stated, this is not journey that one chooses to go on. We had been married for 65 years when DH was diagnosed. Even though DH is still only Stage 3, the disease has already tested my resolve to be his caretaker to the end. The man you love will slowly disappear as his brain deteriorates. Can you visualize yourself wiping his butt after a bm? Wiping poop off the carpet? Watching him 24 hours a day without relief? Giving up your job, hobby, etc.? Giving up any intelligent discussion? Always be in agreement with whatever he says? Lying comfortably? Wow, that all sounds pretty daunting even to me, but we have a 67 year history and I have chosen to love him until the end. Make a choice that you can live with. I wish you well.

MAW5

https://alzconnected.org/discussion/comment/247917#Comment_247917

Thank you, his daughter is the POA, I don't get into his bills or any respositlities that his daughter will be in charge of when that time comes. I don;t live with him and we are 45 minutes away from each other. He called me last night to see how I was doing that he hasn;t heard from me for awhile. I just talked to him over the phone 2 days ago. He believes we will be together forever, but does not realize how his memory loss is affecting me or forgetting converstations. I know this has to be my choice, but it is so hard. I am losing sleep.

MAW5

https://alzconnected.org/discussion/comment/247917#Comment_247917

Yes, that is a long time being together, it's. been 2 and half years for me and only see each other twice a month in the winter and more in the summer. We stay a couple days at a time since it's a 45 minute drive. He plays golf in the summer, but I notice more forgetting what just happened or what was said. I am getting angry at this stupid disease, he's a good man and doesn;t deserve this, He doesn't get mad at least not yet.

MAW5

https://alzconnected.org/discussion/comment/267499#Comment_267499

Thank you

SDianeL

https://alzconnected.org/discussion/comment/267483#Comment_267483

have you read the book “The 36 Hour Day”? If not please do asap. It explains the disease and I would ask the daughter to read it too. It will help her help him. Every day I read about someone with dementia wandering off. Some are found dead. His daughter needs to keep him safe. No way she can know how he has progressed unless she’s with him all the time. He will very soon need 24/7 care. So sorry.