Hi everyone I want to update on our experience at the VA "emergency visit" that was called, due to last week me having a breakdown and after talking to the doctor and social worker they agreed to meet us and re evaluate our need for the 10 hour respite. (per week)
This may be a bit long, sorry , but I want to keep it for my records. I will put it in two parts. ...THE FACTS, because that is what is important and what we need to know, and MY FEELINGS...I will post after. Take in mind, that the criteria to get even just the 10 hours a week "home care respite" is very stringent and the patient is supposed to be "nursing home ready" meaning, incontinent, unable to feed themselves, ambulatory problems.
THE FACTS
We had a new doctor, he seemed quite nice. Upon meeting us he pretty much said," Well I will do a brief physical on Dado, but as to the symptoms and difficulties, I have consulted with the Social worker and we are on board for that, and are submitting for your 10 hours a week home care...."
I tried to stem the tears, and told him, "I was going to beg for help" , (and wear a lampshade but did not have to do that). He checked out Dado and of course due to his amazing diet and home care, his health is good. HE DID NOT give him the Mini Mental Exam it was cool.
The doctor highly advised ME to get some medical and some counseling , some one to talk to as he could see how anxious I was . I told him that I had swallowed my pride and had applied for State Medical, and was awaiting approval hopefully.
Then we had a meeting with the Social worker, for about half an hour. She told me how it all worked, how an agency would send someone on the two hour drive to our place on the appointed day, and stay for 10 hours. She will be coming next week along with a nurse aid to inspect our place, (thank God I keep a clean ship!)
AND, now , instead of me driving the 2 hours to the doctor for his check ups, the Nurse Aid when she is out here, (about once a month), will stop in to see him, and she with the DR.s authority can prescribe meds or whatever else needs to be done. They will also be giving us a rail and chair for the shower which is really great. (memories of my sister last year)
The Social worker asked Dado if he knew what we were discussing, he said no. So I had to explain to him, (again), that I needed help one day a week and that was what we were doing. He just said oh ok. (I know he will not like me leaving him for those hours, but I know, he will be ok)
When we got back to our town, I went to our mailbox, and there was my APPROVAL for State Medical....
Who knew, despite seeing what all you feel here, I should have been prepared for my emotions. All through the doctor and social worker visit, I felt like I was an outsider looking in, OR,,,like I was a FAKER and this was not really real.
MY HUSBAND HAS DEMENTIA AND NOW WE ARE GETTING HOME CARE?? Is this me?
You would think I would have felt HAPPINESS as we drove away, yet, what I felt was a sense of RELIEF, not really happiness. Maybe a tinge of that will come later. I DO feel a bit more faith in the human spirit, and the caring of others, as the Social Worker really pulled for me.
Then, when I got the Medical oh YAY YAHOO.. After 15 years without it, I now will be getting boobs, guts, and brain checked out, probably in that order. I am submitting my "preference" for providers in the mail today...how nice to have a choice. I plan on getting all checked out, and then, shall just keep that medical for emergencies and when need arises.
Judith KB I also dropped off the Agent Orange papers, and am awaiting an examination date.
Well got to go to the market and get some fresh veggies. Thank you my dear ones for caring.
Oh, Coco,it couldn't have been any better news from you! I sincerely hope and pray that things will now progress and that you can/will get the medical that you need! Bless you both! Love and hugs.
As for your feelings...I don't know if we ever feel "happy," even when we accomplish these steps which are very necessary to our health and sanity. There is always a level at which these milestones shock us a little bit. Not because we weren't already intimately familiar with the disease progression in our LO, but rather because it puts a big stamp of external validation on our LO's condition, and we suddenly realize...this is real, this IS going downhill, and that sucks.
I've had a reaction like that plenty of times, one of the earliest being when Jeff was quickly approved for S.S. Disability. Apparently the medical documentation WAS that compelling. It takes away some of the surreality and makes it very real.
Great News CoCo....I do believe that many of us caregivers slowly see the decline in our spouses on a hourly, daily, weekly basis that eventually becomes years. We know they are getting worse and that we are getting more tired and stressed. However, the build up of the spouses condition along with our stress seems to just jump out one day like we had not noticed this was a gradual thing that had been going on for both of us....and then we are truely in need of outside help and care for our spouses. You CoCo reached that point and it will be such a help to you to get the respite and yes your Dh will do fine. He may even like the different expose to the helpers. (He probably tires jopof just talking to you)...hehehe.
Good luck and I am so happy for you...keep us posted.
very good news coco. its good to see the VA and govt issues come thru at some point for the deserving. it will be of great benefit to get that 10hrs respite. go lay out on that beach you want, with a big drink in hand. :) divvi
Great news Coco, get yourself check out stem to stern and enjoy your 10hours respite. I think a numbness comes over us so your reaction sounds really in our lives.
I just had a message on my machine, the Social worker and nurse aid are coming for the home inspection TOMORROW!! Whew, lucky my house is usually pretty clean and I just mowed the yard...
Me thinks, they spring on us on purpose, so you don't have a chance to make your place look any different that "normal"
Will be getting up early to do some spiffing up! You know it has not actually been approved yet, though, I do have my hopes up.
Thanks for all your kind beautiful and loving comments.
Don't worry....your house and everything will be fine. You will be approved or they wouldn't be coming. So glad for you CoCo...you will see a big improvement in how you feel after a few weeks of having some time to yourself to do what you want. I know when I got my help every Wed. to do my thing I felt so much better.
Coco, I remember reading some time back about someone who had one of these visits. They dressed their LO up real nice, helped them pour water, and did some other "helpful" things during the visit. They ended up not getting the help approved. Just a word to the wise. May be others who have had a home visit can fill you in.
Good luck, and congrads on the medical coverage. Mary!!
Was that the patient helping out, Mary in Montana? Well, no worries here, he will be likely hiding in his room like he usually does, and he won't be helping that's for sure. He does everything he can to avoid people, mainly.
yes I was thinking of course the main thing they are going to look is how HE lives, and how the home is kept. I tell you, if the situation is not obvious, not only will I wear a lampshade on my head in the VA parking lot, I will petition congress, hire a lawyer, whatever it takes. This disease has made me a lot tougher that is for sure. I have been know to be too compliant in the past, not any more.
Thanks for the heads up on how your bit of respite helped JudithKB. Funny, how 10 hours is so little, having always had a life where I could pick up and go when I felt like. Now, it seems like the pearl in the oyster.
Coco, Mary was referring to ME. I had an appointment with an initial Hospice nurse and I dressed my DH nicely and prepped him for the meeting. While she was there, I 'fed' info about my DH to her - saying he went to such-and-such university and was a huge sport fan, to which he smiled and gave us a big thumbs UP..and mentioned all the places he had lived around the world..and he smiled and nodded his head and agreed with comments such as "Beautiful", "Pretty area". Prior to the interview, I reminded him over and over what day of the week it was and where we lived. So, he answered those questions when asked. I was not thinking straight..just wanted him to do well during her interview. Silly me. We made everything nicey nice, he smiled and was charming as all get-out... and he was denied. I called my advisor and was told to call a different agency, we set up an appointment and let her pop in without telling DH anyone was coming. He wet his pants right in front of her, and was practivcally zombie-like during her interview. He told her my name...which wasn't MY name.. (which happened to be the name of his first wife..who he had divorced 28 years earlier). Needless to say, he was approved. He died about seven weeks later. We don't want our LO's to be embarrassed, and it's our nature to want to 'entertain' our visitors. This time, it backfired. Learned my lesson. If you house is spic and span, it may appear you have a lot of spare time on your hands to keep it nice. She won't be wearing a white glove and checking for dust, remember that.
I hope tomorrow goes well. You are such a wonderful person with such a generous spirit.
Locally, someone who is a prospective ALF resident has to be rated on a scale of 1-5. This is because the room and board rate are a specific amount and then the rating depends on how much care they need and, of course, how much it will cost. H was evaluated at home (which came to nothing because he has refused placement) and I dreaded this.
Regardless, it happened. The evaluator looked at everything, including the bathrooms which shame me. Not what I want, certainly, but N says the stress of blowing them out would be worse for H so we live with this.
H was dressed in what I would call pajama pants and a pullover knit shirt. I answered the door but he came up behind me to welcome the evaluator. Clearly she was a pro. She told me to stay within earshot but not be seen so that I could later compare with her what he said to what is what.
The interview took about an hour and then after comparison he was rated "2"- meaning he could not function independently but could take meds, eat, and ambulate with reminders and assistance.
I remember that she asked him if he could get her a glass of water and he said "I don't know where that is". He was also very confused about his activities, saying that he did his own laundry (which is like, never), his own cooking, which was true, but no longer, and spent a lot of time reading, and he had not read anything for at least six months prior to that evaluation. She took either thorough notice and/or good notes and questioned me about just about all of this later-at a separate meeting.
Anyway, I just wanted to share this with you and wish you the best.
Abby thank you SO much for sharing that with us. I wonder if you feel like I do today, like a shriveled up balloon and a weak little sad vessel.
How I hope this leads to some help for you all.
Not that anything went wrong with the home visit today. The Social worker and the nurse Aid were here interviewing us for almost 2 hours. I will not know if I pass for the respite Aid for a week or two. Either way, I am glad it is done. They were nice ladies.
Nancy B* I just cry when I read what you went through, and then to have him die shortly after. I mean, Dado is nowhere near that, he is maybe mid stage 5, but healthy. I really do not qualify for the respite according to the needs, (diapers, spoon feeding, ), though he has had some falls and of course cannot be left alone.
I think they know that , that I just need to BREATHE freely for a bit, maybe go for a swim, and though I never loved shopping now I crave a moment alone to do it.
I love Dado so much, and I am one of the luckier ones. He is very sweet. Yesterday, after the doctor in town, we went to Wal Mart, because they have these great push wheelchairs with a basket. (Not the mechanical ones he cannot drive) Dado grabbed the chair as we walked in, and we had fun, it was like he really sensed he needed to be "good" for me. I wheeled him around and the little basket got over filled with cat food and was almost toppling by the time we checked out.
Of course some days I am so mad with him, and tired of all the cleaning and watching watching watching and cooking and and and..
But today, I am so tired, so sore, and sad, for all the suffering people.
(Betty if you read this..well, I decided to post after all...((((CocoBetty))))
Is there another interview tomorrow- or did I just not get the timing right?
Hah! Mother sent me a little money with a note "spend this on yourself". Saks, "needless markup", no longer, I went to TJ's. Went into the restroom and either it has the worst lighting in the world or I am shriveled...
BTW, met with a lawyer a bit ago whom I know because we have a mutual friend. She said "you have lost 20 pounds and gained 20 years, how can I help?"
Coco...I just posted on the Question post it is just above or below this post...My dh had a real melt down this evening. I had sensed for several days he was going off the deep end.
I read it JudithKB, and had just posted above you.
I just cannot get over that you had thought he was "getting better" a couple weeks ago. Can you have a little drink to calm your nerves, and is there enough Seroquel to get him through until Monday?
This is what people DON"T GET....how it can change just moment to moment.
I have thought that your dh was so similar to mine JudithKB, though, I did not realize he had had delusions before. Warm thoughts and hope going out for you.
Abby the interview was today. I am so mixed up right now..mixed emotions waaa waaa what a baby.
Wolf--I say that Steve's AD hasn't toughened me up, it's made me a grownup (finally)! I have met Briegull in person and I'm not so sure you will be able to take her :)
Abby--you made me smile--Saks, "needless markups", etc. That was another life, wasn't it? I'm lucky if I make it to one of their outlets once in a while. I agree, now it's Chicos and TJ Maxx. Besides the money, I just don't have the same lifestyle anymore. But I do miss the SFA and Neiman's catalogs--online just isn't the same.
Coco--glad the interview went well. Enjoy your husband's sweet demeanor and I hope it lasts. To me, the most difficult part of all of this was my husband's personality change. His old personality was MIA for years but finally did come back--I pray for good.
When the nurse was giving Dado a Mental test at home yesterday, she showed him a page with two shapes, a diamond and a square. She gave him a pen and asked him to draw those shapes. HA HA when we looked he was drawing a clock, they were giggling like crazy.
Then, she said, I want you to write a sentence, any sentence. He took the pen, and wrote, a sentence. (smarter that us)(very squiggly letters)
The questions on what year, what month, family questions, he got all wrong. (1969, November, and he was the oldest of his 5 siblings...(not)
Dear Coco, I am so happy for your well-deserved medical and hope your respite comes through quickly. You will probably use some of it catching up on your medical appts. I know how that goes. I have spent the last three years taking dh to drs. trying to get his diagnosis and getting him care so this year was going to finally take time to do my care. ie mammo, dentist, eye, etc when he developed heart failure. He is home now and actually doing pretty good. Plus we got great news... our attny finally got the private disability to PAY. So I am still going to get my medical work done while I can because the future may not leave me time to leave him. Plus I am not sure how long I will be able to pay medical esp. with his declining health. Too young for medicare and his monthly premiums are very high. He has one more year to get medicare and I have six but at least my private premiums are low. No money left for Saks but I might get a new pair of jeans and t-shirt at JCP :-)
I've written this before but will again. When asked to draw a clock dh drew a grandfather clock. The thought went through my mind "you want a clock, buddy, I'll draw you a clock!" Now he probably wasn't thinking that at all. The doc just said "interesting".