Straw that broke this camel’s back!

Jarmac

I came home today and found my BF (with MCI) had done some laundry. 7 items on a medium load. He does this frequently. A trivial thing in the world of dementia. Many caregivers would envy a situation like that. I’m ashamed to say I lost it. I told him he has to move back to his condo. He is able to do all of his daily living tasks. His forgetting, repeating, constant questions, sundowning, shadowing and living with him is so hard. He has taken over my home. I feel like a visitor and spend lots of time in my bedroom. I have no legal standing and I want his family to step up…which they will not do if he lives here. I want to remain a couple. He was not happy! But, an hour later he forgot the details. I know my situation does not compare to the difficulty of others. Everyone here has my respect. This is so hard. He has been dealing with this for 3 years.

Joe C.

Jarmac, Yes the laundry issue is small but believe me when I say I would not want to be in your shoes. Your journey is only going to get more difficult from here and with no legal standing and lack of family support there are all kinds of additional challenges you may need to deal with in addition to caring for him. I don’t know how your relationship is with his family but if you’re committed to remaining in his life now is the time to sit down with his family and come to some understanding/agreement. Who will be his medical & legal POA? Who will be financially responsible for his care? Will they step up and help with his care? I hate to sound callous but if you cannot get his family to step up then I would suggest you step back. I can’t imagine navigating this journey in your situation.

M1

I think Joe is exactly right, and I'm sorry. I would either get legal and financial control/authority or step back. If his family doesn't step up and you're worried about him being exploited, you can always call Adult Protective Services, they will appoint someone to oversee his affairs. Not ideal, but better than nothing. Did you follow through on getting him to go back to his condo?

harshedbuzz

@Jarmac

He sounds well beyond MCI at this point given shadowing and sundowning behaviors. Sadly, the lack of empathy is lost early in the disease.

Given the terminal and progressive nature of this disease, you might want to consider whether your wish to "remain a couple" is even possible. Many of the folks here in committed long term marriages and those of us who have literally known their LO since birth can find ourselves bereft of the reciprocity that defines a relationship.

HB

midge333

Honestly, I would strongly recommend leaving the relationship. With no legal standing, you will have all the responsibility and none of the control needed to be the responsible party. An impossible situation.

Jarmac

https://alzconnected.org/discussion/comment/217105#Comment_217105

Not yet. He woke me twice last night because he was upset.

Kibbee

I’m in agreement with Joe C and other previous posters. This disease is a long and difficult journey. Even with the right tools / POAs, it will a challenge. Things could quickly progress to a point where you will be more and more consumed by his care, and more and more exhausted. You could find yourself entrapped in a caregiving role, and could end up resenting your BF.

Believe me, it is no fun watching your friends move about freely, able to be spontaneous, have adventures, travel and enjoy life, while you are stuck at home with your PWD. I’m married and my DH is a pleasant guy, he has no behavioral issues and is relatively easy to care for. I have all the POAs plus enough $ to smooth the path, but I will admit to sometimes feeling angry and resentful watching my hard-earned retirement, and my remaining healthy “able to get up and go” days, steadily drain away.

Consider this, even if you walked away from being his primary caregiver, (and the burden of responsibilities that entails), you could still visit your BF and be a caring and supportive companion.

Jarmac

https://alzconnected.org/discussion/comment/217109#Comment_217109

I may be incorrect when I say shadowing and sundowning. At bedtime, he gets upset and will return to the issue 4 more times before he stops -takes about 30 minutes. If I may out of the room, he may come looking for me. “I didn’t know where you were”.

ImMaggieMae

https://alzconnected.org/discussion/comment/217109#Comment_217109

I agree that he sounds well beyond MCI, somewhere in the early moderate stages. As he progresses he will need more care and supervision, perhaps he does already. The laundry situation could just as easily been a stove situation where he left the stove on and walked away or left the house, forgetting that it was on. He has no control over these situations. You can no longer teach him how to wait for a full load to do the wash. He is incapable of re-learning these things. His reasoner is broken and while things may seem to get better sometimes in the very short term, they will progress. You must have legal and financial responsibility to make decisions that he will no longer be able to make. His care will take over your life. You can see that from reading the posts here. If you’re working, you will have to find care for him during the day. If you are retired and caring for him yourself during the day you will likely need some amount of respite care which can be very expensive. You must have control of his finances and POA to arrange for this.

Ideally, you would be able to sit down with his family and work something out. I’m so sorry you have to make these choices, but I do think you need to make them now.

Denise1847

Dear Jarmac,

These wise people know what they are talking about. Please take their advice. This is a very long and miserable journey. Talk to the family and tell them that he is moving back to his condo and that they need to step up. It is a funny thing about alot of humans - if someone else is taking care of it, then they won't step up and just let you do all of the work. Don't let this happen. Your health, both physical and mental, will be at risk. Good luck and keep us informed.

Dutiful One

Jarmac,

You are in a hard situation. I totally get it. Your worries are not trivial. My husband has MCI, and behaves in a similar manner. With him, it's the dishes. He insists on loading it, and will cram what should be two loads into one, tossing dishes randomly on the racks instead of stacking them in a way that will get them clean. Honestly, it's one area I've learned to let go, even though it makes more work for me.

My husband, too, will look all over the house for me. If he's outside and I'm not right there, visible, when he comes back in, he'll walk all over the house, calling out until he finds me. If he's doing some task, he'll either seek me out to help him or will stop me when I walk by, saying, "Got a minute?" He's become very needy and co-dependent. Even though we're married and both live here, like you, I spend a lot of time hiding out. I'm working on creating a "safe space" where I can retreat, but it's difficult with all the interruptions.

Although there is no physical labor such as changing undergarments or helping the loved one shower, there is still a lot of work in the form of cleaning up messes caused by a loved one's inability to organize or finish tasks. In my house, I clean up everything from crumbs to clutter left in my husband's wake. The mental fatigue from listening to the same stories, having everything critiqued and analyzed, and having to remember everything for both of us, is real. It sounds like you are experiencing "fight or flight" on a regular basis.

I hope you are able to successfully reach out to your BF's family. My husband has shown signs of impairment for years, and a recent medical trauma caused a further decline. This led to finally getting the MCI diagnosis, but I really believe there is something more going on. My "cautionary tale" for you is that an illness can cause a decline that can't be bounced back from. Often our loved ones are farther along than we can see, and trauma can bring on a decline that creates more challenges.

ThisLife

I second what previous posters have said. You stated you want to remain a couple, and I hope this doesn't sound too harsh. Unfortunately, you are no longer a couple now. You are a caretaker. He is no longer capable of being a partner nor of reciprocity due to the disease. The caretaker responsibilities will increase; it is time for his family to step up. I'm so sorry you are experiencing this.

SDianeL

Please read the book "The 36 Hour Day" and learn about the 7 stages of Alzheimer's-Dementia so you know what the near future holds. Sorry to say the future is bleak. Based on your comments he may have already progressed beyond MCI. He could soon have hallucinations & delusions and require medication. He may become agitated & aggressive and cause you harm. He could leave the house and not know how to get back. He will forget where the bathroom is and begin incontinence. He may stop communicating & sit and watch TV all day but not remember how to work the remote or know what day/time it is. He will be up during the night and you won't get any sleep unless you have help. He now can no longer drive or be left alone. Period. He probably wouldn't know what to do if a fire broke out. He may cause the fire. He won't be able to use the phone. This is a heartbreaking & terrifying disease and without his family helping and you having legal authority, I would end the relationship.

Victoriaredux

The relationship you had with him can never be taken away from you- those memories & feelings are safeguarded in your heart.

The relationship he is capable of now is of an increasing dependent adult body with a brain that is decaying from a fatal disease [ assuming he was checked for /treatable curable diseases that present like dementia] and you have no HIPAA, legal or financial standing.

You say he has a condo- who is paying the mortgage /HOA fees, utilities? Those tasks sound beyond him. Someone with full authority needs to be handling that now.

Since he sounds unsafe alone I'd talk to a elder law attorney or APS about how to safely for both of you get him to the 24 hr care /oversight he needs. Do you drop him at a relatives home, ER?

The family well knows they are saving 5k+ a month on memory care with you handling it , and they'll inherit, I assume his assets anyway .

If you did try to get guardianship and he has assets , they could again let you do the heavy lifting and then try to remove you at the end to ensure any inheritance - second wives have lost control to first marriage adult children. It's an ugly disease and people can behave badly.

I'm sorry .

Mimi50

https://alzconnected.org/discussion/70034/straw-that-broke-this-camel-s-back

I agree with the other comments you should leave the relationship. My husband has vascular dementia. He was diagnosed two years ago. Some of the behaviors you are describing that he is doing. Are not things my husband is doing. I would say he past MCI.

Jarmac

Thank you all for your helpful comments. I need advice on how to get him to understand he has to move out. I have told him daily for the last 3 days. This results in a “discussion”, which leads to leaving the room, returning immediately and discussing again. Multiply that times 5. He will start packing “tomorrow”… but tomorrow he doesn’t remember. He feels something is wrong, so he is especially needy.

concerned_sister

Does he have a place to go? If that's worked out, hire movers to pack for him. It seems he has no motivation to do it himself.

I should also add to that, that it is a feature of the disease to have difficulty iniating a task, and following through to complete a task. Multi-step tasks likely are asking too much at this point.

Iris L.

Hello Jarmac. Please reread all of the above comments. Your PWD is beyond "discussing " and "getting him to understand". He is unable to pack for a move. Yes, he can gather things into a pile, but that's about it. You will have to take the initiative on everything. He cannot execute functions. This is the disease. He may feel that something is wrong, but he does not fully understand because he has anosognosia, he is unable to comprehend dementia. Please reread your responses, there's great guidance.

Iris

M1

Jarmac, from the sound of it he is incapable of living by himself. You may have to call APS or sue for guardianship. You definitely need legal advice.

midge333

Can you call his family and have them remove him from your house and take him back to his home? I would act ASAP. The longer this goes on, the harder it will be…

SDianeL

if his family won’t step up to care for him, contact your state elderly services. He can’t live alone.