I'm reading of so many situations here now, those with issues about anger management, placement, financial, caregiver illness, disease progression, and on and on, yet we are all on the same awful path. It is just so crazy that each of us, to some degree, are facing our battles mostly alone. I do have that calm, kind and easy to manage guy, but his issues are so many and totally exhausting to me (late stage 6 ?). I see all of us pushing ourselves to the point of dropping, crying when no tears are left, yet running to help with that next trip to the bathroom, etc. Then we get that unexpected bit of sleep, or a second wind, and go for it again. Why are we waiting for a traumatic event to force us to make up our minds about finding help, or at minimum researching placement opportunities? It is so emotional, and I get so exhausted, I don't seem to think straight, and just put it off. Can't even bury my head in the sand....too tired. I can only imagine if I were walking in some of your shoes. Argh!!
My point is, I need stop for a bit and make finding assistance a priority if I plan on doing any good for my DH. If only just knowing I have placement decisions ready, or arranging for more than three hours a week for help. I see many of us here doing the same, avoiding the need to put our valuable bit of energy towards at least researching assistance, instead, hoping for some event to force the decision for us. We need to at least take some steps to check it out. Anything to help see some daylight. (Hope now that I've said this, I get busy with it, ha!)
Remember my motto - "Sooner Rather Than Later". I moved into an Independent Living Facility before I needed it, and within 6 months, I needed it. I put Sid's name on a waiting list for Day Care a year before I needed it, and when his name came up (9 months later), I didn't think he needed it, but I sent him anyway, and it turned out that he needed it. I applied for assistance in the home long before I needed it, and when his name finally came up, I needed it desperately. I will be applying for placement, knowing that when his name comes up, he'll need it.
If you are private paying for everything, you have lots of options and time. If you have the money, the agencies will jump at the chance to take some of it from you. It has been my experience, personal and through listening to others - when we are "exhausted to the point of dropping", as you say, it's time to find help NOW.
If you need financial assistance, whether through the VA or the State, you need to get on lists ASAP.
Thanks for your response Joang! You advised me before to seek the advise of an elder attorney, etc., and I have been sitting on my thumbs. Bad me! So I am trying to get myself jump-started and take your advice. You sure had it all together in your plans. Wow! My first step is to set up appointment with an attorney, and see at least two residence options here on costs of placement for an idea of local costs, as he is not a veteran, and we don't qualify for assistance that I am aware of. Most likely it will be pay for service. Thought I had some taken care of, as far as protecting my assets, putting savings, deed, etc in trust, and creating POA and trusts, but now I'm worried I didn't cover all those bases. (not an 'elder attorney'). Will also check again with our local Alzheimer's Assn. They helped me find the agency that is helping me once a week now, but can do more as I need it. Huh, guess I'll call them again too :) I'll try to give you an update later, to keep myself in check mostly. (soonerthanlater, soonerthanlater,....soonerthanlater)
janny, you're not alone. Although I hired and elder law atty several years ago, he did not give me good advice as to how to protect MY assets, so I have to see another one who truly understands the Medicaid laws in our state. I also have researched and decided on 2 alfs however I have not put DH's name on the lists. Doesn't do any good without a name on the list. We both need to get motivated!
My DH is probably late stage 5 and I know from reading this site that I also need to get started planning.. Today I hired a woman to come in for 3 hours once a week for a start. She will be doing some light housecleaning. DH would never consent to have someone just sit with him. I need to see an elderlaw attorney but he is at least an hour away so need someone here for that long a time. I do go out to the grocery and leave him alone for short periods but I know the time is coming when I can't.
this thread really got me inspired, I finally started filling out paperwork, and checking out some local Adult Foster homes for Medicaid qualification etc. Just talked to the VA social worker and she says they are getting funding for more Foster Homes soon.
I found THREE places here, local Hawaii/Filipino places with 3 patient quota. AND ONE IS IN MY NEIGHBORHOOD< 4 blocks away!! I am going to check it out next week. I have 3 to look at , right here in town, and oh how much better than an institutional place.
nice to have a little hope. I am still not quite ready...but as janny says, taking the steps! Thanks for the heads up.
I've done the legal work and put my DH on waiting lists at daycare places and ALFs but my biggest problem is facing my day to day reality. I retired from my full-time job last week so that I could spend time with him while I have the chance, but what I'm experiencing is making me panic a bit. He has some sundowning and delusions, he wants to drive again and thinks he is in his 20s. He is getting belligerent and sullen. He follows me around and compulsively changes his underwear all day. He sleeps til noon and only wants to eat ice cream. It is like having a spoiled four year old. I haven't seen any plateaus since his dx in early 2010, he just keeps declining. I'm terrified of what's coming at me. Thanks for letting me vent!
Good thread, Janny. You've identified what I think is a major problem for us spouses of people with dementia. We are often so caught up in the day-to-day, minute-to-minute workload--physically and emotionally--that we forget about the big picture. Advance planning is critical.
Fiona68,my DH compulsively changes his underwear and socks all day,and yes ,only wants to eat ice cream and his Dr. just said he is like a spoiled 4 yr.old.His sundowning starts earlier each week.He too is getting belligerent and sullen,just glares at me.Will not do anything I ask hime to do.It is so frustrating,what will it be next. I know if I try to get help in, I will pay for it when they leave.
Have you tried Ativan to help the sundowning and other behaviors?? You might want to ask your doctor to prescribe Ativan and it probably would help with some of the behavior problems. You might be surprised about help....my dh didn't want help either, but he learned to really like the gal that I hired. I told him I had hired her to do cleaning...and that is what she did...but, at the same time she watched him so I could get out and do something I wanted to do once a week.
yhouniey and Judithkb, thanks for your feedback. I do have a caregiver here 3 days per week and we give him Ativan in the morning, since that was when he was most agitated. We have begun to give him a second dose during the day and hope that will lessen this fixation on leaving to find his friends (in another town, another time). I am hoping for an opening at the daycare soon, as some of this may be boredom.
I know I sound like a whiner and I know I'm lucky to have help, but I'd love to know the secret of how to handle their constant needs and behaviors. I've never put up with this from anyone, not even my children. At least I could put them in a timeout or down for a nap! Gotta go. Thanks for being here.