I'm considering leaving

Al2024

My GF has what appears to be Stage 4 AD. She has two 50+yr old sons and a daughter. They are weird. They refuse to talk to me. My daughter says it's because I am of the other political party. I don't know how that would have any connection with her health.??

She's getting worse (surprise?) and I have no way to communicate my concerns. Also, My wife died 12 years ago of lung cancer and I took care of her for 3 1/2 years. I'm not going to go through that again, so when my GF gets bad enough I've intended to leave our relationship. We've been together for 11 years. I'm in my 8os and she's 9 years younger. She's been a great companion, but not a real lover. But every time I think about leaving our relationship, I feel guilty. We live in separate houses a half mile apart, exercise in the morning and watch TV together in the evening. Her grown children live in another section of the country. When I call them they will not answer the phone even when I text them that I want to talk to them about their mother. I wrote a letter to her Doctor 6 months ago and asked about getting help for me. She never answered me. Plus, since we are not married I have no right to her medical information.

I'm getting frustrated because I feel alone with no one to talk to for advice or help. Her youngest son is going to visit this Christmas and I am considering breaking up with her then and hoping that her kids will take care of her.

Any advice?

Thanks, Al

Jgirl57

Hello and Welcome to our forum . Since you are not married and do not share a residence with your GF , I do not think it is unreasonable for you to end the relationship . You seem to be trying to advocate for her now , but the road gets bumpy and her family will need to get more involved before her disease progresses. I am glad you found this forum and maybe could introduce the son to this forum. Stay in touch with this group and do not feel guilty if you do decide to end the relationship. Be honest with her son about your plans. Hugs to you .

Al2024

Thank you. I am very empathic and it pains me to hurt her. I guess I'm looking for either a different way or approval. Of course, I'm trying to advocate for her because there's no one else to do that. Her personality is changing a little, she complains more and gets irritated. This year she had her ID stolen and that was a large effort for me to help her. It was tiresome.

Just having you answering was a wonderful feeling. I now feel less like I'm all alone. Thank you!

SusanB-dil

Hi Al2024 - The doctor may not have been legally able to get back to you, but still could have read what you wrote. It is good that you are concerned for her, but not everyone is meant to be a full-time caregiver, especially to 'this'. Could you maybe just keep an eye on things not as her being a GF, but rather, as a friend, stepping back from relationship? If her family will not step-up, maybe eventually call for a welfare check if you discern that is needed?

loveskitties

You might want to contact your local Social Services and discuss the situation with them.

You seem to have no legal right or responsibility regarding her medical or financial well being.

SS should be able to contact the adult children. If they have no intention of taking over her care, then SS could apply for state guardianship.

If you don't want to go this route, at least see an attorney to make sure you will not have any liability should something happen on "your watch".

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GothicGremlin

Hi there @Al2024

I'm sorry you're going through all of this. This is a tough situation especially since the two of you have been together for 11 years.

I'm with @Victoria2020 on all counts, especially the not waiting until Christmas part. I would do it much sooner for all of the reasons she stated, but also because the holidays can be difficult without dementia being in the picture.

Sending you all good thoughts!

BassetHoundAnn

I also agree with all that @Victoria2020 has written.

I think you should leave the relationship before the holidays. And I definitely think you should leave before your friend's dementia progresses to the paranoid phase.

My mom had a gentleman friend. She accused him of filling her garage with old bottles of motor oil and other car maintenance supplies. I chuckled it off at the time. Sadly he died shortly after that.

Her paranoia moved on to her girlfriend of 30 years. Like you with your friend, her friend lived just a half-mile away. She and my mom would get together every day. She accused her friend of sneaking into her house and stealing all sorts of wacky things. She accused her of rearranging her kitchen cupboards, filling her basement with cardboard boxes, filling her refrigerator with food she hadn't bought and would never eat.

The alarming thing was that there were sensible people who believed my mom, that she was being terrorized by this assumedly wacky friend. My mom threatened to call the police on her friend. And who knows she may have. When I took over her care I found her wallet full of business cards of police officers.

The fact that your friend's children don't regard you as a valuable ally, grateful for reporting on their mother's health and watching over her is a tragedy. They should, especially since they live so faraway.

Her three children need to step up and care for their mother.

For your own health and happiness, you should not feel any guilt for stepping away. It will be tough, this is an old friend. But I would never wish on anyone the anguish that my mom's old friend went through when my mom started bitterly accusing her of ransacking her house.

harshedbuzz

@Al2024

This is a difficult situation. Yours is a friendship and not a committed relationship, so it's not appropriate to be assuming the responsibilities of a spouse whatever your political persuasion.

In your shoes, I might report the situation to your Area Agency on Aging describing the situation as a friend who is a vulnerable elder who seems to be having a cognitive shift with adult children living at a distance. They can assess the situation and contact family. If family doesn't step up, APS may start the process of her being assigned to a professional guardian.

I agree with the others that this isn't a situation that should wait until Christmas.

HB

ButterflyWings

@Al2024 I agree with all that the members have posted here. You are rightly viewing this situation as not something you should continue trying to facilitate. The adult kids have a willing and reliable backup (you), so they are being enabled in a sense, to keep doing what they are doing for their DM (nothing).

Maybe it is time to start with the fiblets we use to give the most comforting response to our PWD LOs. Maybe you don't have to word it as "breaking up" with her, since you are concerned about hurting her...maybe say you have received some news of your own that you have to focus 100% on (whatever you choose to make up that confirms you have to be unavailable effective immediately). (A trip? Health change for you that requires significant work, therapy, a detailed program etc?,) I am making this up but just wondering if you can lay the blame on something other than her illness.

I agree you have done your duty as a concerned friend and need to step away long before Christmas. This will give advance notice to her kids, too, that its really time to take on their responsibilities or someone else with legal rights, will take over her care. That way, son can arrive with a plan rather than being surprised by the news that you are no longer the go-to guy. Area Agency on Aging seems like a good place to start, and the letter confirming you have concerns and are not able to provide the supervision and care that she seems to need, with example of her stolen ID etc. Have you spoken with a Care Counselor at the 800# for Alz Association? 24/7 and free. They may have some good ideas for you too.

Iris L.

I agree with Butterfly Wings. Do not tell your GF that you are breaking up with her. I had two close friends who abandoned me when I began to mention that I was concerned about losing my memory. One friend told me I was talking too much about myself. My other friend, who I thought of as my little sister, told me she was backing away from me. I never asked either of them for help, just to listen to what I was experiencing. Since these were my closest friends, their loss devastated me. I had thought we could have become like the Golden Girls in our older years. But that was not meant to be. I was very upset for many years! I suggest that you don't put your GF in this position. If you must go, make the leaving about anything but her.

Iris

sarah61163

To minimize drama, tell your girlfriend and her sons you are going away for an indefinite period of time and they need to handle her caregiving. Give them some phone numbers for home care options. Medicare can cover some of it.

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Al2024

WoW! I am so surprised at all the responses. There is so much to think about. It will take me awhile to absorb all of them and decide what to do. Thank you all so much! This is quite a web site!

Al

Al2024

It's over a month since I last posted. I have considered what you all said and decided that I didn't like the option of leaving her. You appeared to be concerned about my financial involvement, which made me realize that, yes, I am vulnerable to her children's potential accusations. So I wrote a letter stating that I never took any money from her and asked her to take it to a notary public and get it signed, which she did after some anger that she felt she was not trusting her kids. Anyway, that's over and she probably forgot all about it.

So I am going to wait until Christmas and see how it goes with her and her kids who will be visiting her then. I hope to be able to educate her one son about her condition and tell him about this web site - if he'll talk to me????

When I took her to her doctor's appointment I got to talk to her doctor which was a surprise especially since it was unexpected. So I wasn't prepared and of course didn't get to ask the right questions. Her Doctor said we shouldn't travel because that will make it worse. I checked and that only applies if she is in late stage. She's in the middle stage. Sometimes she appears to be able to reason and work things out. At the same time she forgets yesterday and can't accomplish complex tasks - she gets overwhelmed. She still drives. We live in a gated community so she only goes where it's familiar and she gets around fine. I don't let her go anywhere distant or strange by herself. Thus I am very uncertain of her condition. I don't let her get into situations which may cause confusion so I don't know how bad it is. I can't figure out how to determine the seriousness of her disease, her level of dementia. Of course it's impossible to know how rapid or slowly the disease will progress. That's what frustrates me - it's so uncertain.

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JDancer

Were you present during the Dr. appointment? If the doc suggested no travel, your friend may be further along than you realize. The doc may have noticed things you haven't, or perhaps an assessment tool such as MOCA was used.

It can be hard to notice deficits in those we love. For years, I ignored the early signs of my DH's dementia. I thought we were just having a hard time communicating.

And, please, do what you can to stop them from driving. It's not safe.

Jgirl57

AI2024; I am glad you returned to the forum with an update . It is wonderful you are being a good companion, but her children need to take the lead on her care and future plans. Since she lives alone they will not truly understand as her condition worsens. If you are present when her adult children visit , you will be the “scaffolding” that holds her up and again they will not see the extent of her brain disease. This is hard because you care about her, but it does indeed get rough . You may have a couple of books to hand to her adult children even if they are not speaking to you and then make yourself invisible during their holiday visit. I recommend “The 36 hour day” book.

M1

I hope that you (and her children) understand that a) someone needs to hold her power of attorney for finances and healthcare, likely sooner rather than later; and that b) she should not live alone or drive, also likely sooner rather than later. If you do not want that responsibility, you probably need to make it clear to her children what is needed. If they won't talk to, so be it, but you can always leave them messages in writing or in person.

Emily 123

I'd let the family know now. If you're not planning on doing caregiving (which is your decision to make) then sooner is better--a bit unfair to spring it on them during the holidays when they're visiting. At least let her son know that you've been to the doctor with her and that there are concerns.

harshedbuzz

I'm glad you updated. I was wondering how you were doing with this sad and difficult situation.

Your said: "It's over a month since I last posted. I have considered what you all said and decided that I didn't like the option of leaving her. You appeared to be concerned about my financial involvement, which made me realize that, yes, I am vulnerable to her children's potential accusations. So I wrote a letter stating that I never took any money from her and asked her to take it to a notary public and get it signed, which she did after some anger that she felt she was not trusting her kids. Anyway, that's over and she probably forgot all about it."

I would advise talking with an elder law attorney about ways in which to proactively protect her and yourself. I don't think a notarized letter is proof of anything in this situation if the dementia is on her medical record. My late MIL had a marriage her dad made annulled because grandpop didn't have the capacity to sign legal documents.

So I am going to wait until Christmas and see how it goes with her and her kids who will be visiting her then. I hope to be able to educate her one son about her condition and tell him about this web site - if he'll talk to me????

I hope they listen. You need a Plan B if they don't. If she has actually been evaluated for dementia and diagnosed, then you could share her electronic medical record as a means to getting their attention. If not, this could go either way. Either they'll be alarmed by the progression of the disease, or their head will remain up their collective butts to avoid assume the life-style altering duties of caregiving.

If the children do not come around, you could reach out to your Area Agency on Aging and APS to discuss next steps. The state/county may decide she needs a professional guardian and assign one which would relieve you of any caregiving duties.

When I took her to her doctor's appointment I got to talk to her doctor which was a surprise especially since it was unexpected. So I wasn't prepared and of course didn't get to ask the right questions. Her Doctor said we shouldn't travel because that will make it worse. I checked and that only applies if she is in late stage.

Oh, it's true. Most folks here will attest to a drop of about one level in the 7-stage model of progression when a PWD is removed from their regular environment and routines. My friend's mom was OK to live alone about 1/2 mile away but on family vacation she needed 24/7 supervision because of the risk of elopement. Even my dad who only traveled between his own homes summer and winter had about a week where he was showing progression-- confusion, incontinence, increased hallucinations.

She's in the middle stage. Sometimes she appears to be able to reason and work things out. At the same time she forgets yesterday and can't accomplish complex tasks - she gets overwhelmed. She still drives. We live in a gated community so she only goes where it's familiar and she gets around fine. I don't let her go anywhere distant or strange by herself. Thus I am very uncertain of her condition. I don't let her get into situations which may cause confusion so I don't know how bad it is. I can't figure out how to determine the seriousness of her disease, her level of dementia. Of course it's impossible to know how rapid or slowly the disease will progress. That's what frustrates me - it's so uncertain.

You probably can't appreciate how much scaffolding you provide in her life because it likely comes so intuitively to you.

I would be concerned about the driving. It's one of those skills that is OK until it isn't. While you are not financially at risk as a friend, I would take steps to stop this now if you can.

HB

AnderK

I can't add to what has been said. All good words. Except to say that you don't have to be married to get medical information. She can give permission to her medical team to discuss her situation with you. My concern, though, is doing so makes your very slippery slope even more so. And that permission should, perhaps, be more appropriately placed on her childrens' shoulders. My best to you.

forbarbara

So many of us here have been through hell with family members while trying to care for our PWD. I’m sorry you’re going through this. No matter what you wind up doing, please also take good care of yourself. Lean on us in this forum for support if that helps. The emotional toll is heavy on those who witness and navigate the effects of this disease.

good luck.

JJ401

Two years ago I traveled with my DH who was early mid stage. I would not recommend.

If she forgets yesterday and has difficulty with complex tasks, she should not be driving. Driving is a complex task. Without warning she'll forget where she is going. People have been found hundreds of miles away forgetting. Most states have a way for family/friends to contact the DMV. They won't tell her who contacted, but they can have her come in for a driving assessment.

This is not going to get better. You need to extricate yourself. If the kids won't answer the phone, leave them messages.

Your desire to help her with the ID is admirable, but you need to stop. If something like this happens again, call the kids and leave a message that their mom needs help. Call the local police and give them the kids numbers. As long as you are willing to do the work, the kids won't step up.

The letter you had her sign most likely means nothing legally.

eaglemom

From what you write we can tell you so want to do the right thing. But what is the right thing? Since you are not married that changes things. Her family seemingly resents you and I fear your distancing yourself from your family tending to everything.

Maybe the adult children don't know what to do? But with you handling things they won't even attempt at helping their mom. I'm sorry your in this position, its very difficult because clearly you care for the woman. But maybe a little more time apart is what is needed so her family sees her decline. And in that time let your family enjoy having you around.

eagle