Looking for a Friend to Get Through This With....

GenieinaBottle

Looking to meet with someone with a similar situation as myself for normal discussion and friendship. In the Saint Petersburg/Clearwater/Pinellas Park area.

Bailey's Mom

GenieinaBottle…I am in the Sebring area…not close enough to have coffee but could use a penpal myself. Buckling under the pressure dealing with this alone.

GenieinaBottle

Ok… Sounds Great…. I will text you tonight as I just got back from the drs with him….maybe we can text privately don’t know all the bells and whistles here yet… thanks for responding….

Bailey's Mom

I'm new here too, but see that you can send a private message…sounds good.

GenieinaBottle

https://alzconnected.org/discussion/comment/216649#Comment_216649

Hi….I will have to get back to you tomorrow…as I am exhausted…..see!

tallyshooter

https://alzconnected.org/discussion/comment/216635#Comment_216635

I'm interested in other people's coping measures.

I worked for the Army for a long time, so any coping measures I use now were probably already thoroughly tested long ago. 😅

I can list all of mine, or just this one:

1. I lock myself in various rooms (especially bedroom at night) to avoid verbal assaults during delusional periods. Sleep is critical if you're stuck dealing with a situation all by your lonesome, like we are.

Bailey's Mom

I sleep in the living room on the couch…but am so stressed out that I don't sleep very well. in the early morning…about 4:00 am…I join him in bed, but rarely can fall back asleep. He is not showering these days and sleeps in his clothes so it is not a pleasant experience to sleep with him, plus he gets up to use the bathroom every few hrs so I would not get any rest. Luckily he is not incontinent yet…that may be the last straw! Completely alone in this with no family support & husband is getting nastier by the day. He has been newly diagnosed, but I think he has had mental problems for years before.

tallyshooter

Sounds like your situation is way worse than mine.

My loved one still has all their faculties (I think).

I'm not a professional caregiver, so the only thing I can offer to you is a list of my coping methods directed at my loved one's symptoms, starting with what I believe are the worst:

1. I'm changing the "no help" thing to the worst problem: I can go nuclear and provide symptoms as I see them to a doctor (I'm hesitant to do this because there is very real threat of having the tables turned on me and I could get into some sort of trouble, believe it or not; wisdom is supreme, that I know). I already spoke to a psychiatrist and was literally laughed at because of the LO's age (approaching 65). Family is not necessarily uncaring, they just don't believe my LO has young onset anything (even though the LO makes constant attempts to unfriend them and their separate families). I also attempted to contact a local Alzheimer's organization and received no response. And requested legal opinions from lawyers based things I'm trying to preclude; also got no response, possibly because I live in a foreign country and do not understand a legal system that I generally do not have to deal with.
2. Lock myself behind closed doors to keep the LO away when they are delusional. I do this is my bedroom for nighttime or naps. Also lock a hallway door to keep the LO out of the kitchen when I eat. I can't sit at my dining room table and eat because the LO is always right there in an easy chair and there's a 50/50 chance a verbal assault will come out of nowhere.
3. I have a list somewhere of friends and family the LO has unfriended so far (think it's around 23). The LO has a specific plan to attempt to unfriend even more during an upcoming family visit. All I can do is point out to the visiting family that the LO attempting this is a "social withdrawal" symptom of young onset dementia/Alzheimer's. I'm no longer friendly with a cousin because my LO would not let him step in the house last year (I think; I'll try to visit him this or next year to rekindle the friendship). So, my coping mechanism is to avoid being mobbed by family as my LO tries to turn everyone against me and against themselves. The sad one is an adult niece who has no earthly idea why my LO doesn't like them.
4. Financials are fixed as much as I can fix them. This was a problem couple of decades ago (that's how long I suspect my LO has had dementia), and would be unmanageable at this late stage if I had not figured out the dementia thing. I removed the LO's name from access to all bank accounts last year.

I'll write some more tomorrow. I have a pretty long list of coping measures because this has been going on for so long (I only realized something was seriously amiss last year) …

Note: I added this text before I signed off. I'm trying to adapt my coping measures to your situation. We're lucky enough to have an upstairs bedroom (LO sleeps alone up there). Sleep is obviously critical in your situation and you're not getting enough. Is there any way you can change your sleeping situation? We have a fold-out bed in our basement I used when I did day jobs in other cities. It has wooden slats, which is a type of bed that does not harm my back. Can you afford to buy a small bed to lock yourself in a room away from your LO?

Bailey's Mom

Talleyshooter, thanks for your comments…helpful. I think the sleeping arrangement is the best that I can do for now…I'm getting 6 to 7 hrs a night, so that's not too bad…except for days like today, where he got up at 3:30 am & made coffee so it's going to be a long day.

Too bad about your LO unfriending his family…my DH dislikes all of my family and has kept me away from them as best he can, plus he is only close to one of his family members, so we basically have nobody.

Do you have children? We don't, which makes arranging finances even more difficult. We do have separate money, but medicaid goes after everything if he has to be placed…I am allowed to keep 178K, a house and car, which is not nearly enough. He is currently the agent DPOA for finances…will have to change that since he can't handle anything like that anymore…the problem is finding someone I trust who would even be remotely interested. I have to do something, because if I were in an accident or became incapacitated in some way it would be a disaster. Could I ask what you have done?

Getting too long, so enough for now!

tallyshooter

I Googled "LegalZoom" and "dementia" to see what they have (I have no connection to LegalZoom, other than having paid them money in the past):

https://www.legalzoom.com/articles/the-basics-of-conservatorship

https://www.legalzoom.com/articles/estate-planning?ss360Query=dementia%3Fss360Query%3Ddementia%3Fss360Query%3Ddementia%3Fss360Query%3Ddementia%3Fmod%3Darticle_inline%3Fss360Query%3Ddementia%3Fss360Query%3Ddementia%3Fmod%3Darticle_inline%3Fss360Query%3Ddementia%3Fss360Query%3Ddementia%3Fmod%3Darticle_inline%3Fss360Query%3Ddementia%3Fss360Query%3Ddementia%3Fmod%3Darticle_inline&sort_by=changed&page=6

Note: I bolded words for things that might help your situation.

I've used LegalZoom in the past for various things (not related to dementia) and they offer quality services. In short, I paid for admin things from the company that steered me into U.S. state courthouses to do the actual legal work. Very helpful from my perspective because I have to fly to the United States to get things done.

As I noted above, I walked in my bank one day and spent some time with a competent employee (think she may have been an experienced supervisor) and had my LO's name removed from my bank accounts. I don't think I could have done it online or with a phone call. I had to walk in the bank. I'll reiterate that point once more in the Note below (because this whole experience is a whopper of an eye-opener for me).

On all the other legal stuff, I don't have any debt, and my LO will receive percentages of my pensions if my LO outlives me. I'll probably soon start talking to my LO about getting wills, etc. updated. I'm stuck dealing with a foreign country's legal system for stuff like that. I can get the American versions updated, but I'm full expat now, so I would have to ask a lawyer who can practice both U.S. law and law in the foreign country I live in if an American will is valid in my foreign country (please don't ask where I live; other than having legal insurance and understanding the basics, the country has oddball laws that I'm worried about). If my LO has an incident that makes it obvious professional help is needed, I'll cross that bridge when I come to it by heavily leaning on my adult children.

Note: Health care professionals need to work on defining or elaborating on areas like "finances." I now know why I had financial problems a couple of decades ago, when I should not have. My LO has had the "no empathy" dementia symptom for a long time. As much as I worked to get ahead, my LO blew the money. I made enough money to have no financial problems. It's not enough money if an LO is constantly trying to "steal" the money because they're delusional and "thinks there's lots more where that came from."

tallyshooter

I should probably note I have not yet looked into things like a DPOA, etc.

I know how important a power of attorney is.

Bailey's Mom

Interesting, & sounds extra complicated with being an expat (I was going to ask where you live!). My main problem is choosing someone, or a professional, to handle our finances if I should become disabled or die first. DH is completely unable to do any of it & since we have no children (who probably wouldn't have the expertise either in reality) will have to be creative. I'm relatively intellegent so given time will come up with a plan. I did decide to take a vacation before things get too bad…booked a cottage with 2 bedrooms, full kitchen & living room plus big screen porch right on the beach in the FL Keys…we have stayed there before & enjoyed it, although in a smaller accomodation and before alz diagnosis. Being cooped up together in a studio efficiency for a weekend would have been unbearable and a recipe for many meltdowns, so opted to pay up for something that might work…we'll see.

Bailey's Mom

tallyshooter

https://alzconnected.org/discussion/comment/221894#Comment_221894

The one good thing I have going for me is I can leave the country anytime I want. I get treated like an indentured servant. In reality, I am not.

Bailey's Mom

Talleyshooter…Join the club…I feel like an indentured servant too…one who's disliked and not appreciated most of the time. I have thought about living in another country many times…Panama, esp…but didn't and now it's impossible. Good for you!

tallyshooter

I have family who tried living in different countries.

They did not like Panama, nor Portugal.

They're currently testing Germany and don't like it either.

They have the money to live overseas, generally anywhere they like.

I'm trying to help them by flying into various places. I checked out Madeira Islands for them recently, walking in doctors offices, etc., to see what it would be like for foreigners. I talked to a real estate guy who said there were Venezuelan and South African pockets on the island. I didn't even know the islands were there until I checked out all Portuguese territories. I knew about the Azores. Long flight from Canada.

Various issues are (know before you go): Language, blatant racism, banking accounts, housing, transportation (it's very dangerous to drive in some countries; I've done left side of the road in Namibia and Cyprus, and I would never live in a country where I have to drive on the left side of the road).

I can talk about stuff like this all day. :-)