I feel so alone as he changes

Horsemom

I've been with my boyfriend for 22 years.  He is diagnosed with Alzheimer's and his mother died from it.  We never married because we were afraid he would be diagnosed and Texas is a community property state.  

i have worked a demanding job for the time we've been together.  I was forced to retire in December of '21 even though I was not really ready.  He had retired several years ago.  I'm 60 and he is 72.  I can see looking back that this has been coming on for a decade, at least.  He was formally diagnosed in 2018.

I have no children but he has 3 adult children. He became estranged from them during COVID as they refused the vaccine and took Ivermectin like I use to worm my horses.  He is talking to his son again but not his 2 daughters.  I've just stayed out of it all.  That all said, he refuses to talk to his son with me about the future.  I hate to do anything behind his back but I know I need to talk to the son.  This is not going to get better.  

I don't think I can handle taking care of him at home.  I have fibromyalgia, osteoarthritis, rheumatoid arthritis, neuropathy, and chronic migraine.   I  collect pain disorders like some people collect coins!  Physically, I can't handle it if he becomes aggressive.

He's been getting much worse since Christmas.  I try to leave the house a couple times a week to have lunch with friends.  It's hard to remember after awhile what it's like to talk to normal people.  When he doesn't understand what I'm saying, he gets angry and blames me.  I find myself struggling with how to talk to him so he will understand.  His short term memory is almost gone.  It's scary.  We live on a farm and there's so many things that can happen.  I now have to try to monitor what he is doing outside while I do my own work.

I've rattled on too long.  I have very close friends and a sister, but I don't want to be a burden or be that person who only talks about her depressing problems.  

II guess my immediate issue that I need help with is what to say to his son.  He told me he told his son but I'm not really sure of that.  I don't even know what my goal would be.  

I've read some of the other posts and it is scary.  I see stories of peop!e who are heroic caregivers.  I don't think I can measure up.  I'm just scared, and sad, and angry that this happened, and that is being childish.  I've always handled everything that has come my way.  I survived 34 years of being a high school educator.  Surely I'm tough enough for this.

Pat6177

Horsemom, welcome to the forum! It is a great source of knowledge and support. I’m sure you are tough enough for this. It is tough to set limits and be realistic about what you can and cannot do. Things will go smoother if your plans reflect that you are not able to physically care for him, especially as he progresses. But plans do need to be made.

Does your boyfriend have his estate planning documents in place? One of the first things recommended here is to see an elder care attorney (nelf.org) and deal with will, powers of attorney and Medicaid planning. Medicaid rules vary by state. Do you know who your boyfriend will want to have as his POA? This may be one of the things to discuss with the son.

Not sure if you’ve heard of anosognosia yet. It is common in folks with dementia. It is where PWD are unable to see that there is anything wrong with them. It is not denial. They are just unable to recognize their symptoms. And trying to point out their symptoms will not help. 

I’m sure others will chime in with their recommendations. I think we all feel alone in dealing with this crappy disease. But this forum is a great place to vent. And the folks here “get it”.

Iris L.

Horsemom wrote:

II guess my immediate issue that I need help with is what to say to his son.  He told me he told his son but I'm not really sure of that.  I don't even know what my goal would be.  

You've been reading threads and Pat gave excellent advice.  You need to ensure that preparations are made.  This is for your benefit too, because everything about your lives will change in a major way.  A few members live on farms or in deep rural areas.  You cannot rely on him talking to his son because PWDs have anosognosia.  He may mention something, but it will not be complete or a thorough understanding.  

 

I suggest you read about dementia-proofing the home as much as possible.   Keep him away from power tools and pesticides and such, also flammables.  If there are weapons, remove them or secure them as much as possible.  Read about driving.

 

There are many threads from unmarried partners.  You need to be extra cautious about your future after 22 years.

 

Iris L.

 

Stuck in the middle

Welcome to the group, Horsemom.  

I think I would print out the pdf "Understanding the Dementia Experience" to which Ed linked in his reply to Justine2023, give it to the son to read, and tell him this is what his father is facing.  I would tell him what you told us, that you will not be able to care for him to the end of his life.  He needs to know that, so he can start making plans with you.  Including the PWD in those plans is likely not possible, simply because he is unable to participate in planning.

Don't worry about not being able to provide all of his care, without help.  I don't intend to do so for my wife, and no one will blame you when you reach the end of what you can provide.

Mac P

 I see stories of peop!e who are heroic caregivers.  I don't think I can measure up.  I'm just scared, and sad, and angry that this happened, and that is being childish.  I've always handled everything that has come my way.  I survived 34 years of being a high school educator.  Surely I'm tough enough for this.

I’m 5 years into being pretty much sole caregiver for DW.  I gotta say, you sound like a hero to me.  You have come a very long way on this ride.  I prize toughness, too.  But over the past few weeks I’ve realized it’s not really just about toughness, it’s also about knowing when to get help.  Part of rising to the occasion for me is now getting us the help we need, starting with a day activity/care center for 2-3 days a week.  That’s what I need to be tough enough to do.  Best wishes to you

Ed1937

Horsemom, welcome aboard. Sorry you have a need for the forum, but it is a good one. You will get a lot of help and understanding here.

Here is the link to the article Stuck referred to. https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf  

You have a full plate with your own physical problems, and it's good for you to realize your limits when caregiving. I don't think you have a choice but to talk to his son. It would probably be good to ask him to not tell his father about meeting with you. "Going behind his back" will benefit both you and your boyfriend, although he likely will not realize that.

Do you think he would be open to consider moving to town? I know that would be a hard thing to do, but you have to consider your future needs. It sounds like you already know that running the farm might be a problem.

Many times when there are people who are not married, and one or both have their own children, things can become nasty when one passes, or even in the course of caregiving. I just want to make sure you are aware of that. We've seen it several times here. I hope you and his son can work things out that is fair to everyone.

toolbeltexpert

Horsemom welcome to the forum that nobody wants to join. Sorry for the reason you found us. I agree with Mac your tough enough. Every day is new and different. We have to face things one at a time. You need help learning how to communicate with a person with dementia, pwd. They call them therapeutic fibs, learning the right things to say, hiding the triggers so they don't pop up all the time, watching our body language as it is one of the ways pwd pickup on our frustration, this is a hard one to do. I would roll my eyes before I turned my head and bam instant trouble. You have gotten some really good first steps from pat. I did those things early and they really help when things get really hard. I thought I was gonna keep my dw at home till the end. That didn't happen and placing my wife was something I had not prepared for you do need to have those plans in place if you become or have a dpoa. So much for all the negative things, you know his stories they are very useful in distracting him when things start to go south, bring up a good memory this is a useful skill. You can still have good times. Watch some videos on techniques that help use the time you have positively. I recommend  teepa snow videos. They are tons on YouTube.

Well I hope you keep reading here it is the best source for help, feel free to vent and scream use all caps if necessary. We all get it.

Stewart

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Horsemom

I appreciate everyone's advice and caring.  I'm glad to have found this message board.  Luckily, and sadly, I have Medicaid experience after caring for my parents before they passed.  I appreciate the ideas on how to talk to his son.  I don't know how his son will handle it but I know he is a good man.  I suspect the girls won't step up and I don't blame them at all.  I'm all too aware of the responsible party trick from nursing homes here.  

Our assets have been kept strictly separate and there has never been an occasion when we have allowed anyone to assume we are married.  I carefully researched common law marriage in Texas and talked to an attorney years ago.  When my husband left me in the early '90s with nothing but $1,100 in the bank and a $1,200 new house payment, I developed quite a strict view of independent finances.  BTW, the house is now paid for totally by me so the ex did not win!  I'm not sure how his other 3 wives came out though.

 There has been nothing here in his name nor has there been any direct payments to me from his accounts over the years.  He kept his paychecks and now his retirement to himself so he stays here basically free.  He used to be able to do the farm work to help out and would buy supplies but that time is past.  His account has grown quickly so he will have some resources at first. 

Fortunately he did estate planning on his own, which involves pretty much just his bank accounts and 2 vehicles.  His son and I have both POAs.  He has a will and advanced directive.  Almost everything goes to his son, who is also the executor, with small unequal percentages to the girls.  I sincerely hope the girls never see the will.  SMH

I've made up my mind to talk to his son next week.  I have a cookout planned here with my work family this weekend and I plan to enjoy it. Most of them are counselors also and they know the situation so I don't have to be uncomfortable about him forgetting.  I'm so lucky to have friends and family around me.  I just don't want to burden them.  My sister took care of our cousin with Alzheimer's for 6 years because there was no one else to do it.  I know she is tired.

I'm going to utilize the resources you all have so kindly shared.  This is a horrible thing, to watch someone disappear.  My parents kept their minds but endured horrendous pain for decades.  I'm not sure which is worse.  I guess it's all just awful unless you go to sleep and don't wake up.  

Another Day

All of the above and please don't forget to take care of you. You may benefit by researching what vitamins and supplements could help with your various conditions. I know that neuropathy is a vitamin deficiency from personal experience. Get on board with healthy eating and a good vitamin/supplement regimen and some of what you're ailing with could be less of a burden.