Just to say hello all and things are a little better here. I think. It will be 2 wks Monday since we place DH. I didn't get to go see him yesterday because I went to Waco to watch our grandson compete in the state summer track finals. It was hotternheck and sweat poured but he won 2nd place in his event. A silver medal, which was exciting. Instead of squirrels, we have kittens and plenty of them right now. Two adult females (mother and daughter) have 4 adoptees (deceased grandmother cat) along with their own litters. This morning the newest batch (3 tiny things) followed their mom to the back porch. Am trying to feed everthing down at the barn..evidently nothing is working. Will go this afternoon to visit DH and spend the night with my sister who is going to meet me at a hotel nearby. That way, I'll already be in town to go see him on Sunday. He wanted a cell phone and phone numbers for everyone. I got one and we practiced how he would call and receive calls. But more than anything, I think it just helped him to know he had a phone. He hasn't used it. Similar with having the checkbook..If he could just see it, he wasnt so agitated about it.
Aw, Judy...some things are so hard to adjust to, I know. Went through the same stuff. Except that when John first had a phone (and still knew how to use it) he ran up a $400 phone bill!!!!! Yikes!!!!!!!!!!
I spent the day (so far) in the barn, went to hardware store. Fixing a lot of things....it never ends. Sometimes, I wish I could just hang it all up and move into one of those retirement communities. Then at the end of the day (or very early in the morning), I sit and look at all that's been accomplished, all the beauty around me, the wide open spaces, the bluebirds..........'moo-cows' and ponies, barn smells.....and I don't know how anyone would want to be anywhere else but on a farm.
Another hot, hot, humid day in KY. Too hot to do anything outside, although I did water a few of my plants. We need rain!! Went to breakfast with our small group of friends, but didn't go to church. DH can't do both - and he preferred to eat today. LOL
Talked to my son and he is doing so much better than the last few weeks, they keep tweaking his meds for his transplants, so doesn't have much pain now, blood sugar back on track, not much nausea, so he is doing good right now. Thanks for all your prayers.
It's really been a very peaceful day around here which I was ready for.
A depressing day - the weather has been overcast and dreary going on day 4. Yuck!! I need sunshine. It has been nice being away from my sister's but I do miss them. I have had a stomach ache since we left - not sure why. Could have been a result of relaxing and the stress of the last few days there catching up with me. Today has been the first day the pain has not been constant. The pain was not bad, just annoying like having a stomach full of gas without the gas. In the past I use to get a similar problem but was a little higher up but it was hormonal - not happening now that I know of. I vote on the stress catching up with me. I wasn't sleeping well at night either and last night I slept a little better, but not the best.
No satellite problem since I corrected the aim yesterday and he has not tried to put the stakes back in.
Vickie glad to hear your son continues to heal. He has been through a lot.
I hope you will get feeling better. Where are you now? We spent several weeks in our travel trailer and it rained a lot and so we were unable to get out much.
I just came back from visiting with my sister in Houston. I really felt bad, about the situation. We were supposed to stay in the upstairs bedroom which we have done before. This time DW was not able to handle the stairs, so they gave up the master bed room to us. Then DW made a mess in the bathroom and I was just ready to leave it was so embaressing. I think we will be limited to using the travel trailer more.
Bob, we are in our membership park in Elma, WA. We went for a drive today and just got back from walking around the park a few times tonight. the cloudy days are suppose to be over for a while and sun to come back. Our son and family are thinking of coming up this next weekend. Will work out good because it is the county fair weekend. Would love to take the little ones.
How horrible about the mess even if it is family that knows things like that happen. When we visit people we usually have our motorhome so things are familiar.
I can't believe it is already August. I don't check in much due to school, and taking care of dh. He has lost almost all the ability to know what things are. If you ask him to put something somewhere, he has no clue where it goes. Today he was looking for q-tips and I told him to look on the shelf above the toilet. He looked at me like I was crazy. He went to the sink. I asked him if he used the bathroom in the sink, he said sure do. I re directed him. This time he went to the cabinet under the sink. I asked again, is that where you go to use the bathroom, he again said sure do..... about that time I guess talking about going made him want to go so he took two steps and was at the toilet and did his business. When he finished, I told him to stand up and turn around which he did. At that time he saw the q-tips. He looked at me and said If I had told him they were there in the first place he would have found them. So I guess you can see, same thing, different day. But it is all good, we will survive and have more stories to tell later. Hope everyone has a great month and hopefully this one will go a lot slower.
I haven't checked in much since placing DH in Feb as I have had a holiday and had several family members to stay since then so have not had time to get use to living on my own until now finding it a bit hard at the moment but guess it will get better. There in New Zealand we have winter and today it is raining, windy and very cold with snow on the rangers around the valley I live in looking forward to some nice sunny and warm weather.
Mammie, Sounds like your DH is where mine is. Can't follow directions & doesn't know where the rooms are that you are directing him too. Sometimes I can't believe that he doesn't know htese simple things. My heart knows it, but my brain sometimes doesn't (or is it the other way around?) You are right...we will survive!
I am entering a new phase today: A hired in-home caregiver full-time for my husband. My daughter will be here until the 19th, but needs to be able to train the caregiver in my husband's schedule, where things are, what he likes, what can be done, what not to do, etc. Also she needs to be able to leave during the days and arrange for a shipment to go back to England. This is a big hurdle for me. I'm still going through some of Diane's kitchen boxes that were in her storage unit, and giving away and tossing. We're almost through. With that, a new caregiver, my husband's declining more, and my daughter's departure, I'm trying to hang on and stay flexible and keep my upbeat nature going.......it will work out. It will work out.
Marsh, the cost of the nursing home is why I am trying the in-home caregiver agency. I will keep you all posted.
For those who have had to place your spouses, I know it is more difficult than the in-home care route. My prayers are with you and all of us.
Hello all, way to hot and humid. Really enjoyed last week in the Mountains. Dylan in still in the hospital awaiting placement. Everyone else is fine. I've been a widow for 5 months as of Saturday. Hard to believe. Very tired, lots of ideas, but little motivation. Hope all is well. Arms around, S
Hi everyone, another month here believe it or not. It has been so hot this summer that we don't go anywhere much because I don't have AC in the car but we are doing soso! This month I am going to be doing paperwork stuff for being my DH's payee and checking to see how much it is going to cost me to put him in a NH. I don't want to do it but I am going to have to. He is getting to the point that he is hearing and seeing things and I don't want him to fall or get lost when he goes outside. I hate this whole thing but it has to be done!!!!
In USA do you not get any goverment help to place your love ones in care? Here in New Zealand I only get $71.20 of DH's goverment paid superannuation a fortnight the rest goes to his Rest Home but I do have to pay $152.08 a month over and above what the goverment pay. His Rest Home is not big but it has a small village, a care wing, a hospital wing and his secure wing. My Mum lives in the village which is very handy for me as it is only at the other end of my Street. My Dad was in the secure wing just over a year ago we lost him, little did I no my DH would be in there within a year of Dad leaving.
Patricia--in the US, the only government help (financially) for long term care is through Medicaid. It is intended to help the impoverished, and there are legal means whereby people who are middle class can shield/spend/distribute their assets so they can qualify as well. However, not everyone is comfortable doing that for various reasons; it only covers nursing home level care, not assisted living. We definitely need a better system in this country--I've read that only a small percentage of the population buys private long-term care insurance.
Marsh, $8,000 per month is the "going rate" for nursing home care in this area.
My DH is driving me crazy! I think someone else had this situation. My DH thinks that we should always be going somewhere or doing something. It doesn't matter that yesterday we were gone for most of the day, today he wants to go again. He thinks we have meetings to go to or places to go, so he is constanly asking me if we are going somewhere. It's driving me CRAZY! I don't mind going places, but not everyday. Anyone else have this problem?
My husband expects to go somewhere every day. He goes to day care three days a week, but on the other days he always asks to go out. We usually end up at the mall and just do a lap around and sometimes stop for something to drink. This usually keeps him happy.
My DH asks me at least 6 or 7 times every night if we are going somewhere. Then he is so relieved everytime I tell him no and that I don't drive after dark. And I do mean that the question is ask every night. He never wants to go anywhere.
Very hot here, and I work out in the heat on a paper route in the afternoon. Not fun. Tonight DH did something odd. He was getting a second plate of food and then took it to the den to eat. We were eating at the table, me, daughter and DH. My daughter and I just looked at each other. One thing you can say about Alz is, never a dull moment!
Re: costs of Memory Care places. I came across to brochures this week while cleaning a cabinet. One quoted $7500 month, but this fee did not include many extras (that I would consider necessities) ie, personal laundry, one on one time with an aide (you'd have to pay extra if you wanted an aide to take them for a walk in the garden in the afternoon, a ride-around on the bus, for example!!!!)... and there were many other extras - prescriptions, hair cuts, etc. The other one was $8500...and (I believe) they both had a scale that increased the fees as they progressed in the disease. The costs are outrageous.
It just blows my mind that they charge such outrageous fees then expect the family to supply clothes, prescriptions, personal items including diapers, etc. A person in prison gets better care.
I do not have to pay for prescriptions, diapers or Doctor visits. Guess we are lucky that our Doctor is one of the house Doctors at DH's rest home & he is seen by her every 3 months or sooner if needed so did not have to change Doctors. I do have to pay for his hair cuts but there is a hairdresser there 3 days aweek and I leave petty cash at the reception desk for things like that. I also have to buy his clothes and soap etc. I get an allowance of $200 a year from goverment towards clothes. After reading what you people are saying here in New Zealand for a little country we who don't have over a certain amount of money in the bank are helped alot.
Elaine, my dh is also very restless and wants to go out. I am resigned to it and try to plan an outing on the days when he is home. Just to the grocery store is usually not enough. We used to go cycling. Now that's no longer possible we often take the metro to downtown Rotterdam, just walk around, have lunch somewhere. Now that we can sit outdoors DH watches the people on the street and is usually content for an hour. I bring my Kindle or a book. Then home on the metro. 15 minutes later he wants to leave again, but I close the gate and lock the door and put away his jacket and tell him TOMORROW. Try to get him busy peeling potatoes even if I don't need them for supper.
My husband is also increasingly restless, but not so much about going out. It's more about getting into everything from the minute we get in the door from my work and his day care. More and more I am having to follow him around as he gets into my makeup, jewelry, pretty much everything. Hard to lock it all up! I am not able to get much of anything done at night, or put things out to get ready for morning as they disappear again. He's kind of like the Energizer bunny. Tougher to supervise then my newly turned 3 yr old grandchild.
Dog, you might want to explain things to his doctor...your husband might need a little medication tweak. It sounds like it is "sundowning". Good luck...I know how frustrating it is.
My hb is doing a bit of roaming, picking things up, looking, reading labels, putting things down, "hiding" things. I'm thinking it will be better when he can't walk. :( Thunderstorm this a.m. Wish it meant temps would go down, but no, heat advisory 105.
Husband was admitted to the hospital on Monday with pneunonia. Thought it was perhaps a heart problem at first, but the xray showed the pneunonia. He didn't show any 'real' symptoms until Moday.......I was really surprised.
Been talking to the social worker about placement folowing the hospital stay. I was told that after the 3 day stay, he would be eligible. Guess it doesn't really work that way. ----I continue to bang my head against the wall.
With regard to the wanting to go someplace all the time, my DH did this for a spell...it was always wanting to go out to eat and he would ask to go out when I was up to my neck in some dirty work like the yard or cleaning bathrooms and it meant stop and change into something suitable...then I finally would say, I can't right now but let's plan to go to dinner and he would be happy with that. Now he will ask in the morning if there is any appointments he has to make and he is happy when there isn't.
As to the cost of nh care...it is outrageous that it can cost 8 grand a month and so much is NOT included in this cost. It is a rip off in that respect and for my two cents it might be better for our wizards of smart in congress to look into that sort of theft of our assets rather than put money into studies of the hormonal effects of poison ivy or rats or other equally stupid earmarks.
In Iceland, there is socialized medicine and everyone gets care..my son in law's grandmother was in a nh toward the end of her very long life. The state took care of it from what I am given to understand. And this summer my middle girl had to go to the doctor and her visit cost a mere 42 bucks USD. However, as good as this sounds there are a couple of things there that need to be taken into account, first the entire population of Iceland is about 300,000 and most live in Reykjavik and Keflavik. We were up in the West Fjords when we went to the medical facility. Secondly, the sales tax on everything, from soup to nuts, is 25.5% and when something is purchased you will see that the tag will say something like 12,500Kr. If you then ask what it the total with the tax you are told the tax is already figured into it...so tax is hidden. You can pay 100.00 USD for a regular hammer, a nothing fancy hammer. This sales tax is in addition to all their country income tax, local tax etc. So there is no easy way around the costs of medical care..seems they get you one way or the other. Still that said, the very high costs of nh care here in the US compared to what is NOT included,as others have mentioned they have to provide in addition to the high cost of residing in this facility, is something perhaps that needs looking into especially as the boomers are coming into the retirement phase of life and with EOAD as frequently seen now....something needs done.
Well, my take on this matter is that if funds from Medicaid could be paid to the family caregivers who are willing to care for someone at home it would ease the burden on the family and be much cheaper than sending all the elderly population to a NH when family is unable to care for them because someone has to work to put food on the table. Sorry for the run-on sentence...!
This will never happen because the chance of fraud is high, some families don't want to be bothered, and most of all, the nursing home lobby is huge.
Sandi = IMO there couldn't be anymore fraud than there is now.
The day started out cloudy and cool again. It has finally made it to 64 degrees at 3pm. For those in the sweltering heat, lets combine the temps and should be comfortable for all!!! Son and family are suppose to be coming up to camp for a couple days. I know granddaughter will want to sleep in MH with us, not sure about her brother. He gets up and gets into everything at home, not sure what he would do if he slept in here. He was caught brushing his teeth with hair gel one day - only 2. He is a handful and has lots of energy.
What bothers me is that Medicaid pays so much less for nursing homes than we are charged if we pay ourselves. Many people who go on Medicaid might be able to pay the Medicaid rate, but they can't pay the private pay rate. If we were allowed to pay Medicaid rate, it would save the government a lot of money.
AnnMW1157 I don't quite understand what you are saying. My dh was admitted to the hosptial 4th of July weekend with pneumonia. After three days he was moved to a nursing home and I was told that for the first 20 days Medicare would pay 100%, the next 80 days would be MC 80% and his MC suppl 20%, after that he will be strictly Medicaid (I had already applied for that) with my participation rate. His care is hands down 100% better than the Clare Bridge facility he was in. He went from walking and talking to bed ridden and 3 word sentences in three days with pneumonia. It appears that what they told me is true, as I haven't had anyone asking me for money.
Sandi* Your suggestion makes so much sense it will never happen!
I was thinking about all this and I was wondering if when the LO is placed and medicaid is used,is there some obligation where the direct deposit of social security funds and maybe the VA disabiity pay has to go directly to the nh or is the family billed? I personally would rather get a bill and pay it monthly than let someone get their mits into my bank...how is that done?
With my FIL, who was in a VA facility, I am assuming medicaid paid then at the end of the year there was an audit of his SS, which was direct deposited. After all money spent was verified as legit (utilities, taxes, personal things, etc.) , the balance would go to the VA facility. At first my BIL was sending money 'gifts' to each child from their dad but after three years whoever was in charge (SS, medicaid, ??) was not pleased with it, so that was stopped.
Visited hb's Thursday a.m. Circle of Art group this morning. It's been on "vacation (for staff) break" for 3 weeks. When I told hb where we'd be going, I knew he didn't understand, but as we turned the corner by the bldg he said, "I see it in my mind's eye; I know." We were about 30' early; so I said we could sit in the car and wait for a bit. He said, "No, I'm going in." He was smiling and excited. Makes it worth the 1 1/2 hr round trip.
This aft we visited his neurologist. I'd given the staff a page of info about his loss of abilities, activities, etc. to give to doc. Don't think she looked at it before coming into our room. She was shocked at how far and fast he's "fallen." Meaningful conversation is gone. No more MME. I told her we are now in the donut hole and he's failing rapidly; so could we quit some meds. Not yet ??? I asked her about Aricept 23. She hadn't heard of it. ? I told her he takes Trazodone for sleep, but it doesn't do anything for it. She said sleep disorder is part of dementia and gave me an Rx for something else, which I probably won't waste $ on since he's tried others and nothing keeps him in bed sleeping. Wanted an appointment next month (instead of 3). I'm thinking, "Sorry, ma'm, we'll take care of health w/family doc now."
Sandi* - I live in PA and my husband qualified for Medicaid. His social security check and his GE Pension continue to go direct deposit into our joint checking account and I am billed for my part of his nursing home bill. His nursing home runs about $7000 a month total and that includes everything except hair cuts and clothing. Everything else is covered. My part of the bill runs just over a$1000 a month.
Haven't been here for a bit so have to read the recent messages and catch up. I've got to stop logging on to this site so late at night as I usually feel I want to share but too tired to get my fingers moving across the keyboard. The heat here in the upper 90s is dragging us down. DH's son from California came to visit for 6 days and we had a wonderful time driving around the countryside, in and out of the air conditioned car, but got to show him the Buffalo National River which is one of the most beautiful places around IMHO. This is the first time DH has not shown a decline after a visit or trip. I think it's because he came alone as his wife and two kids were at her parents. And because he is very laid back and easy going. I wish we could get more people here instead of going through the whole airplane, car, hotels, etc. of visiting others.
Okay, I've worn out my fingers. Off to read all about your lives now.
Over the past 2-3 weeks we have had all of our kids, their families, my wife's sister and husband, and a good friend with her daughter and s-i-l. My wife seemed to enjoy listening to the conversations, but did not enter in. When our son left on Wednesday my wife said "I'll miss you". This was her first acknowledgment that he was here.
Janet, do you think that because we are with them 24/7, we notice every little thing more? My DH does so well in front of other people that they don't think much is wrong either. Then it's back to the norm after they leave.
It's surprising how little attention people pay (I include myself in this) to many things. It's such a weird position to be in when people (esp. relatives) say they don't see anything wrong or they don't see any changes. On the one hand I'm so glad he's in the state where he CAN pass sometimes. I'm glad he's not worse than he is. So why oh why do I so want to argue with them? Why do I want to tell them how hard this is living with a different persona inside the body of my husband? Why do I want them to know that every day is another death? Why when a relative says they don't see a difference do I translate that to mean that I'm a over reactive drama queen making stuff up to get attention?
Terry, unfortunately he was leaving to DRIVE from Maine to New Mexico, so we didn't have time to talk. He did reply "I'll miss you, too". He's not much of a talker.
Terry, it's because you don't want them to think you are crazy or that you are making this all up. You know what I hate.... it's when I tell someone about an incident where my DH forgets something & the person says, Oh well I do that all the time!" GRRRR!! IT'S NOT THE SAME! I know they don't mean any harm, but it's agrivating. Their forgetfullness is not the same as someone with AZ.
ElaineH, DH mentioned early on that he hated it when people responded like that. I can't remember which book on AD it was this is a quote I'll always remember and repeat it to people frequently.
A person with AD responds to people who say, "Oh I forget things too." with:
"Saying that you forget things too is like telling a person with melanoma that you have freckles too."