Boyfriend with early stage
Does anyone have a boyfriend with dementia, repeating questions and forgets conversations? I could use some support if anyone out there can relate. He is very easygoing and loving, but wonder what this will do to our relationship in the future.
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welcome to the place for info and support. Sorry for the reason you are here. What you describe is typical for dementia. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. It’s on Amazon. Also search for Tam Cummings videos on Yourube. Also Google Search for a chart of the 7 stages of dementia and it will show behaviors in each stage. Not everyone will exhibit all the behaviors in a stage, and some behaviors can overlap the stages. It just gives you a general idea. If he can still read and understand documents and sign his name, someone needs to have a DPOA (Durable Power of Attorney) and other documents to be able to assist him with doctor appointments and other decisions and finances. See an Elder Law Attorney immediately. Don’t wait. Come here often for info and support.
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Does he have family-siblings,children ? The disease will require 24/7 oversight at some point and if he needs placement - that can be very expensive.
Seeing the elder law attorney by yourself first to have the financial and legal realities spelled out will give you an idea of what his future looks like. Then you can decide if you want and can afford health [yours] and financial wise to stay his caregiver. Not all but many PWD regress and forget their partners/spouses/lovers/close friends. Only you know if your relationship is such you feel it is yours to take on this level of caregiving.
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It will change your relationship from a loving partner to being a caregiver taking care of everything and doing everything. If you read many of the discussions here you will see the stress this disease puts on the caregivers in long term relationships giving up everything they wanted or planed for. I don't want to discourage you, but when you ask what it will do to your relationship you need to be prepared. I think you should talk to his family if you can and see if they will read the book 36 hour day or watch some of the Tam Cumming videos. I didn't do that because I thought we had a close family and some of them would want to know more to be able to help. They didn't.
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Thank you for the insight, actually I have been in denial until recently and everything that I am learning about this disease is starting to hit me hard. It's been almost 2 yrs since we met and some days he doesn't repeat himself and seems normal. I am stressing myself out. We don't live in the same town or see each other every day. I want to talk to him about what this is doing to me, but that will be very hard to do. He doesn't think there is anything more than memory farts, as he calls them. I even went to the dr with him a few months ago and I was not impressed. The Dr wouldn't address the issue and acted like no big deal, just told me just to answer his questions which I do. I wanted hm to explain his diagnosis and what he and I should expect. My BF had a brother who passed that had dementia and a sister lives in another State with dementia. He has nieces and nephews and 1 daughter who he talks to periodically. I am not sure they know that he has dementia.
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If you have only been together two years I don't want to be discourging but if he has Alzheimer's or some other form of dementia this is a long term commitment think carefully about what you are getting into. I don't know how old you are or anything about your situation so my opinion is not worth much but this disease will to paraphrase someone else on this site will take one life and could easiely take two.
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In my honest opinion, I would walk away now. You’ve only been together for 2 years, part of that already going down the dementia trail. Are you willing to spend the next +-10 years as a caregiver rather than a girlfriend?
I’m already 8+ years into this, coming up on our 53rd anniversary. My husband is still in the early middle stage and there are times I want to run away from home. And he is relatively “easy” compared to what I read on this thread.
If you want to know where this journey will take you, do a lot of reading on this site. Educate yourself on the life a caregiver has (or doesn’t have). Your futute is just as important as his. Choose wisely.
My heart is with you as you may struggle with guilt. Big hugs.
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Thank you so much! Even though I love this man and he is as sweet as can be, I don't feel comfortable getting myself into a caregiving position and making all of the decisions. This will be heartbreaking for the both of us. If he wasn't so easy going and loving , it would be easier to walk away. If I enjoy the time now, with him, and more time passes, it will be even harder to walk away. If he gets worse, or he can't drive, I would be the one going to his house. We live 45 minutes away. I am about to cry, but I am glad I found this site.
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Hello, My name is Angela. Yes. I do. If you like to send me a message. Please do so and we can talk.
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Early in our journey, I would think, if it would just stay like this I could manage. I kept looking for some evidence that it might just stay like this. There is none. Dementia is progressive 100% of the time. It always gets worse. There are no survivors of ALZ. The rate and pace can vary, but the result is always the same. Being on this site has really helped me come to terms with that.
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I would send the Doctor a letter [don't expect a reply unless you hold his AHCD -health care proxy ] and spell out factually concerns you have [examples] and that you don't and won't be living with him as his needs progress so you are letting the Doctor know they need to be watchful and keep him safe. His daughter is probably his closest legal relative so you may want to give the Doctor her contacts. Then as things slide the Doctor can contact her or Adult protective services to arrange for his safety and care.
Your friend may have Anosognosia
https://www.agingcare.com/topics/295/anosognosiaso you explaining how his disease impacts you or will impact him may not make any impression.
I'm not a lawyer but you may want to talk to an elder law atty about your exposure if you keep seeing/helping him. If you know he's driving and his memory is bad , judgement off etc. It's terrible but if something happens - fire started , car accident -the injured tend to try to drag in anyone they can hope to recover from. Even if he gets scammed and the daughter tries to blame you .
It's a frustrating disease because as the PWD changes you hope you can adjust- get a safe balance and relax- but it doesn't work that way -things just get worse as it is a fatal progressive disease.
We're all sad with you.
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I would like to add to my initial reply. I didn’t know you had only known him a short time and weren’t living together. As difficult as it may be, I think you should walk away now. I would fib to him for the reason for the breakup and not tell him it’s because of the dementia. He can’t reason. His mind may not allow him to know and understand that he has dementia due to Anosognosia. This is a terrifying and heartbreaking disease. Some people with dementia live 10 -15 years and some progress very quickly depending on the part of the brain affected by the disease. There is no treatment except clinical trials that may or may not slow the progression and there is no cure. As others have said, I would let his doctor know your plans if you make the decision to not continue seeing him. Also if you know how to reach his daughter I would tell her your concerns about his health. Before long he will no longer be able to live alone and will need full time care. I’m so sorry. Hugs. 💜
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Walk away. Don’t go any further down the rabbit hole. He will not get better, he will not go back to what he was and he will not comprehend discussions. His daughter should be notified of his diagnosis. He shouldn’t be driving already. He cannot be a boyfriend to you anymore and his needs will become greater and greater. It sounds harsh, I know. But you are only two years into a long distance relationship, where can you see this going?
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Hi Angela, I would love to talk with you, I am not sure how else to send a message.
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"Hi Angela, I would love to talk with you, I am not sure how else to send a message. "
MAW5 - click on Angela's boldtype screen name and a box will open with an orange MESSAGE choice -then you can send her a private note.
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Thank you, what you said is making me think and to figure out how to handle all of this emotionally.
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I think that is where I am, thinking that I am able to manage now and that it will stay like this. I just see a loving, kind man who is deeply in love with me. And I feel the same, not able to imagine him being any different toward me. This is hard and I feel so bad for him, no one deserves this.
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it’s never easy. Every one of us have been in love with our spouse or partner at some point in time. My husband was my best friend. I could tell him anything and everything. Now I stop and think before I say something. Some progressions move faster than others. Younger people tend to advance quicker. We also slowly move the goal posts in our own minds, adjusting to the new without even realizing it. Then one day you realize you aren’t laughing as much together, your conversations become more limited as comprehension skills slowly slip away and you wonder when exactly it was that you became the caretaker vs the partner. There’s no right or wrong in what you decide. Knowledge of the facts of this disease vs denial sure helps make some decisions easier.
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Thank you, we laugh, are very compatible, he never judges, lets me be me, he is my best friend as well. He is 73 and physically very healthy. He walks miles every day, stays active, we play games, he's very smart. I pray for wisdom and still reading up on this disease.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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