First off, hello to you all, aloha, you wonderful helpful loving people. And to Soolow, your comment on getting help from the County gave me a little kick in the okole...(behind)
According to our VA clinic and others, IF it came time to put dh in a facility, it was going to be a real hassle and either divorcing or getting rid of assets etc., they made it sound almost impossible.
This may not even happen, but to be realistic, it certainly could come to a time that I will not be able to handle it all, especially in the later stages.
I found a newly founded company in Honolulu that helps local residents with all aspects of medical. When or if it comes to a NH, then gentleman walked me through the whole process and there certainly is hope. Yes there is a fee involved, they take care of everything with the Medicaid people and he said we would absolutely qualify 100%. ( I could do it myself, but honestly they push it through faster and save all the headaches.) He did tell me to not start the process until it is very apparent that I cannot care for him anymore.
Now this does not help my situation NOW, but, dh is handleable, loveable, and not a danger to himself at this point. So I need to find occasional assistance , adult day care etc. I feel a huge relief, just knowing, that if we need it , it is there.
Also, my husband has VA medical, but the type that I am not covered on. This man is helping me to apply for State Medical, yes I suppose it is a type of welfare, but I NEED it, I qualify, and I am not asking for money or anything else. It is limited, 10 visits a year, 10 hospital stays etc., but WOW I have not been able to afford medical and have not seen a doctor in well over 10 years!
I'm happy you have found someone who can help you with things. Remember to check with the VA about day care. The VA hospital by us does not have day care but does have contracts with certain local centers. The VA pays the fee for my husband's attendance. I truly don't know how I would get through this without some respite during the week.
HI deb, I am pretty sure the VA made it clear they DO NOT cover day care for him, ( he is on the lowest rung of care, catergory 5)
They kind of dashed my hopes in some ways, the only thing I got was, WHEN and IF he gets really difficult to care for, they will offer 12 hours a week of respite. I have been trying to contact the social worker,,,(no returned calls), about just what is the qualification, I mean, I can barely go to work and could use some help for one day a week, at least.
The nursing home thing may never happen, it is just such a relief to know it COULD happen if it comes to that. His sisters in Maui would likely object, however, if that is the case and he is not handleable, well they can take care full time.
When we took care of their Mom in the late stages of AZ. , she did not know anybody and we passed her around between the families, 2 days and nights a week each. She was miserable as she was just left to sit in the chair, and would have been much happier to have had full time care.
And yes, I NEED RESPITE...no time at all during the week, he is resistant but we shall see..
deb: Please keep me posted on the VA day care. I called them here in Ca. this mornig and they told me they offered only respite care. You get 15 days twice a year. I was really disappointed. A year ago I was told them contracted with some homes that provided day care. But, they said no..they don't. Thanks.
coco. almost ALL of our spouses are super resistant to outside helpers. i waited 3yrs TOO long to bring in outside help because DH was very negative about someone in the house. and it was a nogo from the beginning but i stuck to my guns and the agency lady he thought was a housekeeper not a sitter for him. he eventually got used to the idea and enjoyed the oneonone with the new folks. it was the best thing i ever did for myself! within a few weeks i was so looking forward to my day out.
We live in a suburb of Chicago. I believe each state is different in what each VA hospital offers. For instance, I'm allowed 30 days of respite care, but can only take it once a year. So if I don't want him to be gone for 30 days but just 7 days, then the benefit is done for the year. I haven't used it yet and am not sure I would until he is not aware of things more.
I did find this link to the California Department of Veteran Affairs: http://www.calvet.ca.gov/VetHomes/LevelsOfCare.aspx and it does seem that the veteran system in California does not offer adult day health care (ADHC).
Coco, divvi we seem to be on the same level as far as out DH's go..I can have 5 hours a week day care but DH won't have it...our Gov. allows me 63 days funded a year respite but again DH won't have it...so I have to do it alone too...thank god for my angel DD. I may have to wait until he's really really bad and uncontrollable before I'll be able to have help. A friend put her Dh in day care, didn't want to go , but when she picked him up, he said..."I don't know where I went, but I had a great time"...if only we could get to try that!
One of the things I think that has helped me with my dh regarding this in home care is that he knows I was getting to the end of my rope and he also knew I was the only one to take care of him. If something happened to me he would have no choice except to go to a home some place.
He is so nice to me now compared to a year ago this time when he was totally out of control. Every night he tells me he loves me and thanks me for taking care of him.
So..Coco and others don't lose hope that your loved ones can change and maybe won't care if you send them to day care or get in home care.
Julia, oh how I wish my DH would go to day care. We tried at the beginning of the year, but he perceived it as a nursing home (older people with canes & wheelchairs) so he wouldn’t stay. I left him there but they called me after a half hour. He was so angry at me. Now he is even more dependent on me. As far as getting someone in-house to take care of him. I know that everyone here says that their LO eventually got used to it, but I know that at this time it wouldn’t work for us. One of our daughter’s came & stayed with him for a few hours. He doesn’t recognize her as our daughter anymore. He was civil to her, but when I got home he gave me that “evil look” & after she left he was very angry at me for leaving him. (He can be very hateful at times). JudithKB, my DH has no idea that I am taking care of him. Because he has no idea that anything is wrong with him, so you are lucky in that aspect. I do however foresee the day that he will go to daycare & I think I am going to give it another try early next year.
Girls, how I wish we could all get some respite..just one day a week would be lovely...this is hard work, today is not a good day. I think it must be a man's ego thing, where they won't accept anything is wrong with them. Dh knows who our DD is, but just after a few minutes of her leaving, he doesn't remember she was even here, and asks when is she coming, ElaineH, I think by the time of his next birthday in April (if I last that long)..he will be much worse at this rate, then I'll try to get him in day care. I get angry that I can't get to speak to his Dr. alone, she doesn't see him 24 / 7 and thinks he's doing fine..she should be in my shoes.. My heart goes out to us all...what a way to spend our retirement years!
My situation is not quite as hard as Julia's but I do understand, as we all do, about getting to the end of our ropes. I also think at some level our LOs do understand something is not right and they depend upon us for their security. They may or may not know what the " it " is that is wrong but they are intuitive enough to know something is not quite right and they can't be on their own. MY DH constantly says how he does not know how he would manage without me if I were on a trip..he knows he would forget his meds....and is always expresses his appreciation. That said I still get to the end of my rope too...
I have battles with meals and eating and the diabetic glucose balance causes me the most troubles...then comes the grooming....unless DH is going to fall into the unhealthy realm, if he doesn't want to shave or get his hair cut, even if I think he looks like a realtive of the Unibomber, I let it go for a few days and then get on him..you have to pick the hill you want to die on and there are so many hills....
OH Mimi that is so cute, the unibomber. This is a fairly new phase now, yes I have to help with his grooming, and his choice of clothes.
I was shocked when I checked his feet a few weeks ago and his toenails were close to ingrown. (He used to be so vain and took good care)
So now once a week, cleaning toes, lotion to soften. and checking if he has yet again put his dirty laundry in with the clean.
SO having this glimmer of hope about care LATER< if needed, was such a relief. I was lead to believe there would never be hope for placement if it got that bad.
But now, is one of the tough times, the taking care, the sadness and hurt for them, the no time to ourselves, the finances, burnout etc. How to get through this.
I am proud of us as we each take steps to remedy, I am pulling up my bootstraps and doing more of that next week, looking for help.
Two weeks ago, despite having had other challenges in life, and coming back up, I was literally at the end of my rope emotionally, could not stop crying and shaking and fear. Now, I can hardly believe it has passed, and I hope I never get quite THAT low again.
Coco, I do hope you never get to that low again. Staying in the moment and knowing it's all you can control is the only way to manage this disease. The past is over and I will remember all the good it has and not waste my time on what is done and didn't go well for what ever reason. The future will come and tho I am mindful of its pot holes until I hit one why worry. I will not be reckless but not worry what I can't control at this point. I cherish each good day hubby has and I want him to have all that he can .......but I also want the same for me. This is a work in progress for us all and who knew we all could learn to do pedicures ......could be a skill for retirement :)
Mimi: "you have to pick the hill you want to die on and there are so many hills...." Well said, better even than "picking my battles." The special care unit staff at the care center (nh) mentions picking battles. They, of course don't have to "die" on a hill; they can go home. I'm feeling better and will fly to SB, CA tomorrow to visit our son.
Thank you Vickie, MarilyninMD...I will do just that, I want her to know exactly what I'm going through not just him drawing a better clock...arghh! I spoke to my Dr, and he said to take DD along and if I can't get to speak to his Dr alone perhaps Linda could distract DH or single out his Dr and have a word with her. I too have to remind him to shower, at least he can do that..sometimes the clean clothes end up in the dirty laundry basket, and he comes out with the same clothes ,but at least he is clean, I don't make a big thing of it anymore. I know he appreciates everything I do for him and knows he can't do the things he used to..he says thank god I'm here to help him...so we try to keep going...today's another day!
Coco, wonderful news. Though we can never fully prepare, it makes the anxiety less to educate ourselves and get a few ducks in a row.
Julia, I agree and think it is very important for us to have one on one time with our loved ones doctors. At first I wrote notes for the doctor to read before the appointment and then over time he just saw me for a few minutes before he brought Lynn in. It worked well, hope it does for you as well.
Nikki...a light bulb moment.. with what you just wrote. Perfect,I will write a note for his Dr and hand it to her before we go in to see her...it will be a big note! Thank you.
Julia- I always have a note(more like a file) that I hand the nurse before seeing the dr. that way he looks it over before coming in to see us. But I think the Drs. should have a little one on one with uall before seeing our LO,guess most are just too busy. I can at least call and our dr. will return the call himself instead of a staff member doing it.
Julia, it might be better (for the doctor) if you e-mail or fax him the info a day or so before the appointment. He might have more time to digest it and prepare for the appointment. I have done this since the beginning with DH's GP and it has worked wonders! He knows exactly what my concerns are, and sometimes he will call me into his office - without DH, on the pretext of going over his medications. DH catches on pretty quick - so that's our standard excuse for me to leave the room.
Julia, Vickie’s idea of an e-mail or fax before the appointment is good. It does give the doctor time before he walks into the room to read it (hopefully it will be clipped to the outside of the chart as a reminder). Twice I handed the receptionist a note for the doctor to read BEFORE he came into the room & once he was in the room it was apparent that he didn’t read it & come to find out it was placed IN the chart & he had no knowledge of the letter. Live & learn!
One time I had faxed the letter and he had read it. But when he got in the room, he couldn't find it to refresh his memory, so he told me he needed some insurance information. We left the room and he still couldn't find it - but he asked me to refresh his memory. WELL....I always carry it with me, so I just whipped it out and gave it to him. He just smiled and said I was a lot more organized than his staff! LOL
I think a note would be the best way for me..his Dr is in a big public hospital, and they won't give me her email...everything has to go through the front desk and her assisting nurse..plus she is only there on Wednesdays. We don't get too see her again until next January, his next 6 monthy check up...way too long! Next Wednesday, my DD is coming to stay with Dh , my best friend (support back up)and I will go and see if I can get to have a word with the nurse or better still the Dr. Vickie my Dh catches on quick too...just when you think he's not taking notice he knows what's going on. I'm going to take on board what you said and carry a note with me...one way or another I'll pass it on to his Dr.
you know, when I first took DH to get diagnosed about a year ago, I did not know if I could go in with him. So I sent a well prepared short letter, and asked him to give it to the doctor. They called me in right away and I go in with him everytime.
In so many ways, despite all this crappy disease..arrgggh...blah....I am "lucky" Dh never questions me about anything I do, pretty much. It is like he has resigned himself to have a babysitter. This after his WHOLE LIFE of taking care of everyone else, financially, letting his niece live in the front part of his house for free , with her family, for 10 years. (He lived in a tiny studio in the back)
They took advantage, I think this is one of the reasons he is ok, as when he was well, he saw that I worked hard and more than pulled my share.
I have not heard back from the guy that is supposed to help me with the State medical, for me. It's ok, I am still flying on hope. I shall continue on with it all next week.
AND, one of you on another thread talked about placement in a NH in Florida, how the home is helping you to get the Medicaid paperwork together and you don't have to shell out $6000.00!! Yikes!
When...the time comes, I will definetely check that out first. The company I talked to does it all for $3500.00., and if need be, I will shell it out. Like you who said that...lol...it will cover ALL expenses and I can keep both our incomes.
so nice this week...hanging on ...and taking all your advice to not think too far ahead.