Hi all, I am new here. I've read lots of the postings on here and think you're all doing a wonderful job supporting one another. Hope you can help guide me!
Here's the story: I am a 53 y.o. gay man with a 63 y.o. partner of 31 years. We have just moved my 82 y.o. mother into our home. I collected her in NJ and have brought her here to AZ. The situation arose in Jan. when she had a hernia repair. At the time she had been living alone in her condo and doing well. My brother lived very near by and saw her briefly a couple times a week. He did her banking. He is my ony other sibling.

When she left the hospital her Dr. recommended that she not live alone any longer. She was diagnosed with mild dementia of an unspecified origin. She moved in with my nephew (31 yo) and his wife and 2 kids, one of whom is mildly handicapped. Whenever I'd call (weekly), my nephew and his wife said things were fine. 2 weeks ago, my brother called me and said things were not good. Apparently, they have reconsidered the situation and suggested that she moved to a senior housing arrangement. That at this point is NOT a possibility. She is very forgetful but not dangerous to herself as far as I can tell. She is very slow moving but is ambulatory with the help of a walker. She has been in our home for just over a week and seems to be adjusting well.
She was never a social person, most of her friends being family. She lived alone in her condo for 17 yrs or so, but I know she was very lonely and at times depressed, though never treated for it. She has no hobbies, never really did.

My partner treats her like a queen (yeah, I know, lol). He is retired and home all day to attend to her needs. I come home for lunch for an hour every day. We haven't much social life either, by choice.

I know that this is a progressive disease and hope we can deal with whatever comes up. This is our 1st caregiving experience although my partner (David) worked in xray at the VA for 30 yrs.I assume My mother, (Muz)eventually will need more personal care, toileting, bathing etc. Is this something we can handle, or in fact would it be inappropriate to handle ourselves? I know I'll have many more questions soon, but wanted to introduce myself to all, and get some initial feedback.

There is much more to the background of the story which I have left out for the present. This includes many years of loaning money to my brother and his children which was never paid back. I sure would appreciate any insight anyone can give.

Right now her biggest problem is memory, and occassional confusion,i.e.,confusing family members and names and relationships. Yesterday she said " I forget, who are you married to?" I explained, "David", "oh yeah, now I remember!".
Thanks, in advance. Bill

i read back on all the posts and didn't reply to the financial sit. i am a caregiver in my home doing what you and david are doing and i can't even begin to tell you what a bargain you are at that. times that by 8 and you are just getting in the ball park. i just paid 2,400 for a week of respite care so i could go on a vacation!! and i paid for the groceries and a caregiver to relieve the caregiver during that week!! asfor her remaining 50,000 ask an attorney how to safeguad that for her future. i know my mil has gifted to her son and doughter and we are all of the understanding that it is hers, not ours, this takes a lot of honest, and lastly i am known for my big mouth but i have to ask as stereotypicaly as it sounds but ARE ALL THE GOOD ONES GAY!!!???

This message has been edited. Last edited by: fat, dumb and happy,

Good to hear from ya, catguy! I wish I had more of that gay gene - all I can muster is cutting Mom's hair occasionally! What I know about haircutting comes from trimming my own hair and minor dog grooming. It's no wonder that her hair looks more like one of the dogs chewed it... Y'all are doing a wonderful job! About the vascular dementia/AD thing... you are correct - except with a PET scan, ya can't say for SURE until the fat lady has sung, BUT some of these dementias do hav e certain "hallmarks" assosciated with them... With vascular dementia, people can plateau and even improve somewhat for periods of time. If there are no further vascular accidents, the progression of the disease can be quite slow so long as their general health remains intact... Have as many great days as you can while you can! Perhaps y'all could prevail upon someone who works as a hair stylist to come out to the house and do the perm... Ah heck, if you do nails, just go for the perm! It ain't rocket science...
I hope y'all have many, many warm moments, as caregiving IS full of those, despite the challenges.
Many blessings to you and yours.

it sounds like you are all doing good. i think about all of the folks we don't hear from regularly and wonder how things are going. if you call hair and nails the gay gene then we should all be so lucky.lol your mom sounds blessed to have you to care for her. and you blessed to have this time with her. it can be tough but you will have rewards to last you a lifetime. thanks for the update. get david to do the perm!!

Catguy, great to hear from you and that you bring good news. My Mom doesn't want me to touch her hair except to neaten it up. But I think it is because I am willing to take her to the same hairdresser once a week that she has seen for 30 years. It is the BIG event of the week.

It sounds like you are doing everything right, taking it seriously but keeping it light where you can. Maybe you can not tell her about he visit until right before it is going to happen. Why do you think she will be agitated? Reassure her that he is just coming to visit her in her new and permanent home. Tell her how proud you will be to show him how beautiful and well and happy she is with you and David. perhaps that will reassure her that he is not coming to get her, if that is the concern. I wish you the best.

Hey all! It's almost 4 months since Muz moved in with us. So far so good! I have her DPOA and her MPOA as well as her living will. All seems to be in order.
She had a neurological/psychiatric evaluation with MRI. The Dr. thought she was suffering vascular dementia and specifically thought it was NOT AD. How can they tell preautopsy? Experience? Nevertheless she is doing well. Her mood is good, she eats ok (loves sweets). Still hard to get her to increase fluid intake. "I don't want to be going to the bathroom all night". We warn her if she continues without proper fluid, she'll end up in the hospital. Scares her into 1 glass of water.

We have insisted that she get up at 8am for breakfast and pills, she grumbled the first day, but all is ok now. I think a more regular routine is better for her, I'm sure everyone will agree. She usually goes back to bed for a few hours then gets up for lunch, another requirement. Muz is pleasant enough and is always telling us how good we are to her.

My brother is visiting in Sept and I hope it doesn't affect her negatively in any way. She has gotten so comfortable here. I set her hair once a week and convinced her to let me polish her nails when we are done with her hair. Hasn't had her nails done in years. She wanted me to do a perm, but I drew the line there. NO PERMS BY ME! Guess it's the gay gene in me coming out with the hair and nails. We all get along fine with no disagreements or arguments since she's been here.

Thanks to all of you who have such compassion and good advice for the rest of us. I will post again soon. Thanks again all of you for caring! Be well!

Re the question on cost of Assisted Living facilities: Our LO's AL was a nonprofit run by a religious denomination. AL (efficiency apt., all meals, housekeeping, bathing and dressing assistance, and medication administering) was about $2600 per month.

She's in the nursing home wing now, and the cost is now a little over $4000 per month.

Blue Water,
I talked to an Assisted Living facility about what happens when the money is gone and they told me that the law here in NJ says they have to keep the person provided they have medically necessary status. Dementia probably qualifies all by itself but its a good thing to nail down.

When the money is gone, its gone and the government takes over. I have resigned myself that if my mother goes into a facility, her money will go. We have a friend whose father passed away last year. That man was well off all his life but died on Medicaid in the nursing home. Thats just how it is and the important thing is that the family is relieved of the responsibility; thats what the money is really going for. Caregiving is very stressful; the first director at the day center told me that she had been a visiting nurse for years and had seen many caregivers be the ones who got sick.

Right now, we are paying 24/7 care to two CG's.
They are paid $11.50 per hour, plus the CG agency gets their share of $400. a month. Do the math, this is extremely expensives. I am wondering if a Assisted living facility would be less or the same? I hate to do this to her so soon after my fil passed away.

She is a heavy chain smoker, her house reaks, none of us can stand to be in the room with her for very long. That is the reason we are having ot have someone stay with her, also, the fact that she could burn the house down with her in it, without supervision. She also fell yesterday, she stood up to walk, and fell down. She has no idea how it happened. She has no indications of a stroke, but now that I am thinking on it, I am going to give her a good looking over tomorrow, and try to have a long conversation with her, just to see if she is mildy impaired. I may even have to take her in to the Dr., but, if it was a TIA, it may not even show up on a CT scan, so what is a person to do??? She migh have just lost her balance, which is not good to begin with. The CG, was very upset, she was in the kitchen cooking a meal, when this happened. She was not seriously hurt, the skin on her left arm was torn because of its thinness.

What to do now? We hate to take her out of her home, her comfort area. We live on one side of her, plenty of family is in and out. I am afraid for her to be alone at night, at the same time, again, the smoking is so serious, that everytime I go, I come home with a headache,and a sinus flare up. My h has almost lost his voice from several visits this week.

I don't think a facility would put up too much with this type of behavior. Also, she would be very far from home and the family, there is just not a decent place close to us for placement.

It is just an extreme experience that has us all worried for her finances in the future!!!

I should also say that I went to an attorney here in New Jersey before I took my mother into my home because I wanted to know what would be OK as a financial contribution. I proposed $2500/month even though I did not intend to take that much and the attorney was OK with it.

People tell you declare it on income taxes but I think thats the typical thing a lawyer would tell you so no one ever asks him to explain it. Honestly, if you took in a roommate, would you declare it on your income taxes? Your mother is sharing your home and what she contributes is probably not even a one-third share of the expenses. Its probably good to write up a contract and go to a notary with her and have her sign it. Might you have a problem some day? Sure but what are they going to do to you? Who is going to take you to court for such small amounts of money when you are certainly providing fair market value. You can post a question on elderlawanswers.com and they are very helpful.

catguy,
Do you have durable power of attorney for your mother? I am concerned about David because your situation is a bit like mine in that I took my mother into our home and felt tremendous anxiety over what kind of situation I would be leaving for my husband if something happened to me. Would he have to go to court and get a guardianship just to get access to her money to pay her nursing home bills?

I have full access to my mother's money and pay myself $1600/month and include her normal prescriptions. So thats less than $50/day for care, room, board, laundry, cooking, cleaning, etc. AND the enormous responsibility of it all. The day center I used to take her to charged $54/day. They weren't providing any necessities. I bought a $150,000 life insurance policy on myself with my mother's money (its only $500/year) so that the money would be immediately available if I died.

When this started almost 3 years ago, I was like everyone else thinking that nursing homes charge outrageous amounts and I was concerned about all her money going and no one would inherit anything. Now, I don't think that any more. Someone who can't take care of herself is a 24/7 responsibility. If all of her money (some $350,000 at the time this started) went for her care, so be it. If my husband and I don't want to live like this any more at some point, thats how it will be. At some point, you'll probably have to find a nursing home placement for your mother because it a huge responsibility and you wind up losing your freedom. It would make it a lot easier to keep her there if she paid you some money that you could set aside and feel that some day you'll get to enjoy it.

quote:

Is $500 a month unreasonable for us to ask

That is very fair. I wish I could have hired you back in the day at that price. Try to get 24/7 care for less than $100 a day!

Catguy, when I went to an elder care attorney for mother he told me to pay my self for her room and board and expenses.He did say it was taxable income .Also to keep all recepths for her expenses.A good tax preparer could figure this all out when the time comes.He told me that nursing homes get alot for doing nothing.I never took money and he was not thrilled with me.

That isnt unreasonable CG not at all. I dont work either so my MIL's monthly income goes to paying the utilities if that gives you any indication as to how we deal with it. She pays for her meds and insurance as well.
Considering what a NH gets a month thats a steal IMHO.
Now I dont know how your state works with taxes but here I keep all receipts for MIL because she qualifies as a dependent here in California so not only do we get to write her off on our taxes but her meds and medical equipment gets written off as well. Ask your tax preparer if she qualifies as a dependent

Ok, now is what I was avoiding bringing up. Money. My mother has always lived frugally and because of all the blood suckers back East has only about $50,000 in the bank. She has an income of $1400. Her insurances total $315. David is retired and only draws $1100. I am a self employed optician and don't make alot myself. Is $500 a month unreasonable for us to ask of my mother? This would include her meds, shelter, food ( she eats ALOT), everything she needs, stc. I think it would be hard for her to spend almost $600 a month if we are providing everything else. She has her own lovely room, with french doors leading to a beautiful tropical garden with her own sitting area.
We only have 2 bedrooms, so we have changed our living habits to accomodate her. Can I get some input please?

quote:

surely my sweet Mama has not quit taking the meds to get attention??? MYGOSH, she gets plenty attention from all of us, except my brother...

BWB, have you thought that this might me the onset of dementia? Sure sounds like it to me...

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ROTFLMAO, Catguy! Just because our loved ones may be demented does NOT mean they are not clever as the dickens sometimes! My older son is in much the same situation as David, except that their mom goes to adult daycare. When something gets her panties in a twist, It's my SunnyBoy who has to straighten it ALLLLL out - which sometimes irritates her son endlessly, but then again, on some level, I think it's designed to! Good cop/bad cop.

I think that's a good call. I can't remember exactly the "cover story" I gave Mom when I checked her into the geriatric psych unit for an evaluation... I think I lied and blamed it on the car accident and that neurologists hadda check her over to help improve her balance or some such plausible lie... Once, during all this testing, the doc wanted to see if her EEG was normal during the day, went haywire when sleeping, etc., so she sent her home for the weekend with electrodes all over her head like hair curlers under a kerchief. She was all hooked up to a portable sending unit that we'd turn in in 48 hours and the neurologist would read the results. Well, she laid down for a nap after we got home and ate a late lunch. When she awoke later, she came out holding the kerchief wondering whose it was... She had disconnected every single electrode! Guess she didn't wanna sleep on rollers anymore... The docs gave up on that test...

CG it sounds to me like shes attached herself to David.
She is trusting him and thats a good thing for you what a gem you have there dear.
Next time tell David to ask if she would like him to accompany her to the hairdresser and see what she says.
This could be a matter of her feeling completely safe and at ease with him if he is the one that stays with her all the time
As for the appt. just tell her the day before she is going for a checkup and leave it at that

Oh, catguy, catching on quick are you? use the bargaining chips, and find put the trigger issues. What a Sweetie, OK, so she jerks your chain a bit. I'm just laughing, a little 'cause my Mom treated me like I was Attilla the Hun when I had to skip her hair appointment last friday. Shingles. Me, myself? . I was 53 before my MOM and her "stylist" finally bullied me into my first PERM. I still have doubts. Extremely thin fine hair, now I have "curls", I look like an IMUS subject.
You make the best of what you've got. Tell her that. My Mom's hair makes me NUTS.

Update on Muz. Though she seems to be doing well, she can be shrewd! Saturday we planned on taking her to the hairdresser for a wash and set. Then to some stores. She at first was all for the outing. When she found out that David was staying home to do his chores, she suddenly didn't want to go. She said she was having some stomach discomfort and her legs were tired. Well David and I went shopping and when we returned, she was all better and disappointed that we went without her. She'd forgotten about the shopping and was not anxious to go to the beauty parlor ( I think because her hair is thinning and she is rather selfconscious about it). I can see how she can manipulate us. We've hopefully caught on. She has an appt with the neurologist for an evaluation at the end of May. We've not told her about it and will explain that he is really a gerontologist and is just evaluating her needs. We won't tell her about it till the day before. That sound reasonable? Thanks again for your wonderful input!

Yeah CG, how goes it with Miss Muz???