You are not alone. I'm feeling the same as you. Heavy clouds. And doubting every move I make. I'm so tired of this caregiving, and it is taking its toll on my back, which was better after the course of Prednisone, but is back to being horrible. Just waiting for my apt. at the pain clinic to schedule the shots. Maybe if I feel better physically, I'll feel better mentally.
You have been through a lot this year - researching and fighting about the finances to get Dado placed; agonizing over your decision. We know how difficult it has been for you - pardon my language, but $%^&*# the neighbors. They don't understand and never will, so "let them go". I am going through all of that now - it is very stressful making appointments with scores of different experts and administrators to try to get answers and funding. You deserve to feel "down" now and then.
Put a flower in your hair, take off your shoes, and wade into the beautiful blue Hawaii ocean for awhile. I'll bet it will chase the clouds over your head away for a bit.
Coco, you much better off avoiding those neighbors as much as possible. You know that you love Dado and want to spend time with him. He's still your husband. Don't listen to them. They just make you feel bad
Coco/Joan; I had a "vision" when I read Joan's comment about flower/shoes/wade in ocean. I pictured myself with a dried flower in my hair, in my bare feet running through the snow. I had quite a chuckle.
Thanks for the laugh, even though you didn't intend it to be funny.
Coco.....Of course you are feeling sad. You are in a state of limbo right now. You did all the hard work getting Dado placed and you now know he is getting the care he needs. You don't have the total care responsibility that you had that wears one to near total exhaustion. You are in the phase of..."what now?"....Where do I go from here?...is this all there is?
I have no answers for you during this stage except try your best to get rest, be grateful for the freedom you have and things will fall in place for you. The one suggestion I do have for you and I suggest that you get on it immediately if not sooner and that is call the VA and request the forms needed to file a disability claim for Dado's service in Nam and his exposure to Agent Orange.
If he could get the total disability it would be something like $3,000 a month and when he dies you will also get part of that. Since Parkinson is one of the illnesses if you can get your dr. to say even something like..."it is as possible as not" that his exposure to Agent Orange have caused his Parkinson like condition compounded by AD. You do not have to prove that it true and they cannot deny it if your dr. is even willing to say...something like...he cannot rule out Parkinson. But, the application has to be filed before he dies. Please....don't wait to do this. My heart goes out to you and I wish I could offer you some good advice to cure your feelings right now. Remember, you are young and have a lot to live for and life has alot to offer you...Take care dear friend.
Awwww Coco, here take some ((hugs)) and know you are loved ♥ You know, some people are like poison to us, an illness if you will. If one had something like cancer they wouldn't just allow it to grow, they would do whatever is necessary to cut it out of their lives. And so it is with useless friends, even family, who cause us harm. Don't let them cause one more tear, cut them out of your life. I am glad they are just visiting and you wont have to tolerate them for much longer.
Cocco, I am so sorry for you.....I truly believe that there is nothing worse than loniness. You are and have been such a wonderful caretaker of your love, Dado. Don't worry or listen to others whose opinions are not shared by you as they are toxic. You are doing and have done the very best you know. Your love for Dado is evidenced though all your postings and concerns. Tomorrow will be a better day. Here are some ((hugs)) with heartfelt smpathy and prayers for you dear, Coco.
you guys truly rock, I am keeping all your comments in my diary. Love you so. Today I am going out to a meeting called "Food Business Basics from Farm to Fork", though I already have my little business established when I one day go back to work, it looks informative and to "network" (lol?) Going with a new girlfriend I have met. It is 6 hours long!!! A small fee....$35. I cannot believe I am actually DOING SOMETHING other than visiting Dado, cleaning house and yard, and hiding at home.
After I wrote here yesterday, a huge clap of thunder hit and we got the blessed 2 to 3 inches of rain on the parched land. This cleared my head and heart quite a bit. And I decided to NOT FEEL GUILTY about my gripes and woes, that they are real mostly, and time time time to do something about it.
I put a yellow plumeria behind my ear, (fresh not dried), and a bit of fern, and raked the yard.
Coco-to heck with what anyone else says---you are GREAT-you love and care for Dado and that is ALL that will ever matter!!!! Love you my friend----------------------
Coco, Congrats on starting your new business! You are truly an amazing woman. I wish you much success in your new business venture. You have the stamina and will go far!!!!! May God grant you much happiness and success in the coming years.
lulliebird I have a little coconut business for many years now, I was just going to sharpen my knowledge. It was nice people thought I was so knowledgeable and encouraging. Nice to get the kudos with this slightly damaged spirit.
I love you too bak.
I am just such a whiner, after thinking I really had it together. I was informed yesterday that due to some glitch, I have to pay $500 a month towards Dado's care, and had to cough up $1000 yesterday for back pay. Now I know that does not sound like a huge amount, and it is not, but I can manage for a few months and then I will have to do something else, I just don't have it. After going to this meeting and listening to others, I realized just how close we live to the poverty line, am proud we have been able to manage but sometimes it is a bit scary.
I know...it will be ok. I so want to be strong for us, and for you guys here too. Sometimes I think you are all I have, the few others that care live 3000 miles away. Whine.
Thanks Vickie, yes Medicaid pays the bulk, I really don't understand this. I am calling Social Security today. Sadly this feather on top of me made me topple a bit., I am not as tough as people think I am. Also feeling lousy kind of sick. I know, it will look brighter in a few days. Hugs to you too Vickie.
Thanks Carolyn. I just got off the phone from a very long conversation with SS. My head is spinning. But hopefully the SSI, (not the regular SS that I get at home), will kick in and go to the caregiver to cover the extra...could take up to 6 months and be retroactive. In the meantime I am responsible to pay the $500 a month until it comes. I am confused about it all, but that is what I have to do. When and if the SSI comes through, she should pay me back but who knows?
I can manage to pay this for 6 months or so.
How I wish I could sit with just one of you, someone that knows how it really is, and that understands how I feel. I am now going to find out when the next local Alz. Association meeting is as I am craving this.
((Coco)) Perhaps each state has different laws in this area too? That isn't how it is here, Medicaid pays their share to the nursing home directly. I wouldn't be able to pay that additional amount either, money is such a huge depressant. (if you don't have it) I know how easy a feather can tip the scales. It really has nothing to do with your strength dear Coco, you ARE strong, but we are only human and can take only so much. Love and hugs ♥♥
Coco--I went on the Alz Assn website (www.alz.org) and there are a number of support groups in Hawaii. I can't remember what island you live on, but I hope there's one that's convenient for you. I think it's a good idea for you to try one!
Coco, Like Nikki said, maybe there are different laws in different state. I live in Florida. My husband went into a nursing home in January a few years ago. Medicaid paperwork was started right away. It was approved in June BUT retroactive to when he went in. Also, I didn't have to pay a cent to the nursing home while it was pending. Dado is in a private home, isn't he? I wonder if that is the problem.
that may be the hangup coco. maybe this facility/private home that hes in is not within the perimeters to set up directly pay from medicaide?> and they pay you then you pay them. that may be where the difference is on why you are being asked to pay til they get it squared away. now sure how it works if they will pay carers directly and then you would get a refund directly from the home who you paid. or if medicaide may try to get that refund from them to cover costs. any way, like you say for now just hang loose til its settled if you can buy your time. it will work out in the end. stay calm and try not to let it upset you. dealing with govt entities is always stressful. divvi
Cocco, So very sorry to hear your bad news. I hate dealing with the government ...so very stressful. It's frustrating thinking that USA doesn't provide better assistance to families that are dealing with this horrible disease. It's a financial killer...as if we don't have enough to deal with. Why can't our country cut out this unneccessary spending to foreign countries and help our own...GRRRRR
We all try to present the afflicted with confidence and a smile so as to to stir fear in them. We smile though our pain, we ache for our loved ones and we grow strong in ways that we never knew. I find that after I act happy a while sometimes it becomes me. I hope the same for others.
Opps above: We all try to present the afflicted with confidence and a smile so as to NOT stir the fear in them. Sorry. I try so hard to keep my fear for my wife's condition hidden well behind my eyes. I think I've succeded but I'll never know for sure.
Yes,soolow,I always put on a happy face for my husband,I would not want him to see how badly I feel.I try to act like everything will be OK.I get up a few hours before him,my time alone,and a pair of blubirds came and sat on the fence right near my kitchen window.Remember the song "remember this,life is no abyss,somewhere there is a bluebird of happiness"I try to keep that in my mind.Bluebirds are so beautiful,they cheer me.
yhouniey that is so darn precious, those two bluebirds. Alas, I do let my guy see my sorrow sometimes, not often. Most of the time I just kiss him and stroke his face.
May bluebirds continue to bless our lives with songs of happiness.
Julia,what are willy-wagtails? Never heard of them.Today as I walked to the creek to see if the blue heron was there, the bluebird sat on a lower branch and allowed me to get quite close to him,I talked softly to him and he cocked his head back and forth(don't have anyone else to talk to) he probably thought I was crazy. a sign of spring . Coco,you must have beautiful birds where you live,do you enjoy them?We are loaded with Cardinals and they are picking out mates right now.
yhouniey....Willie Wagtails are black and white ...active feeders. Birds can be seen darting around lawns as they hunt for insects on the ground. As they do so, the tail is wagged from side to side. Insects are also captured in the air, in active chases....just 4-6 inches long, the tail is longer than the body. They usually chase each other around in the air...very cute.
we are blessed to have a 7 month-old grandson who comes to visit us every day. I so look forward to him being here and my daughter coming by - every time my hubby reaches for him or speaks to him he (grandson) has the biggest smile on his face for his "grandfather". A bright spot in the sadness. As for the neighbors - I have some who avoid us because they don't want to face that this could easily happen to them as well. When they act that way I just smile and keep going! Honestly I'm too busy taking care of hubby I can't let myself think about them.
Georgie caregiver, Oh the wonderful sunshine of a beautiful boy baby...how that brightens every day. Their genuine innocence ...a sweet smile on their face...a giggle of joy...you are blessed to see him daily. My little guy lives across the pond as they say. I miss him deeply and probably won't be able to see him for some time as my role as caregiver doesn't allow for pond jumping :(
Neighbor: I get why they would avoid you, but don't get it! I have always tried to reach out to people in need. Didn't realize how caught up family, friends and neighbors can be. My phone seldom rings now that hubby is declining.... with this disease we learn exactly who true friends are...and exactly how and where are family members stand. No, I don't want to hear "they're in denial...that's a bunch of bull sh--" It's "they're in selfish."
lulliebird: thanks for the comments. Sorry you don't get to see your little guy!
I agree with your comments about the neighbors. My daughter keeps saying - "Mom, make a list of the friends who have said they would help". I told her there have to be two lists ' one of people who "say" they'll help but really don't want you to call on them... and those who really mean it!
It could be the home he is in accept medicaid but requires the family to pay the balance after medicaid. That is the only way I can see her having to pay anything.
I assume you are talking about my situation Charlotte?
OMG I cannot even tell all about it right now, it is a mess but I am working on it. It even came down to me having to call the head office at United Healthcare. It is going to get ironed out it is so ridiculous. It stems from the government not wanting to pay the regular social workers to handle placement because they do not want to pay them, so now they have all these private agencies and their myriad of weird ways. I mean, here the Medicaid lady did all the great stuff and work and figuring income , and we qualified for 100% coverage.
When I get it all ironed out, I will start a thread on these RACC, Adult Foster homes, for everyone's information. In the meantime, I am keeping my head up, staying in the fight, and the main thing is Dado is well cared for.
I am new here. I am now losing friends. The tv is becoming my new BFF. I feel that life has become "A pity party." We are in early stages but I gave up the first day of diagnosis.
EKL in time you will find your new BFF is here. :) I often say I have seen everything on tv at least twice. This is a sad way to be. But do try to find bright spots. Buy yourself flowers, put up a bird feeder or get your nails done. Something just for you. I still have my days, pity party and all.
EKL, you need to prepare yourself for a long journey and keep up your strength for you and your DH. The early stages are the worst....you feel like someone has just punched you and you cannot recover, you cannot wrap your mind around what's happening now and what the future will be. It's all so overwhelming and on top of it all, people you love begin abandoning you and your spouse. Unfortunately, you are not alone, many of us here have had the same experiences and have made it through to where we are even though we thought it impossible.
Some suggestions to help you plan/prepare for the future and feel like you do have some control. First, if you haven't already done so, please find a certified elder law attorney (www.naela.org, www.cela.org) and have Durable Power of Attorney (DPOA) and Living Wills (of course a will if you don't have one) drawn up for you and your husband while he is still able to make decisions. The attorney will also advise you on other matters you need to deal with - putting all assets in your name only, including your home if you own one, limiting credit cards/bank account access for your husband so he doen't spend thousands of dollars without you knowing (many of us have had spouses spend thousands threatening financial ruin or damaged credit ratings because the spouse wasn't paying bills), strategies for hiding keys or disabling cars should he not be competent to drive. If you do many of these prevention /preservation stratigies now it will be easier as your husband's health changes because you have already planned for them.
You now have a place where you have friends who will support you-we've all been through it and can understand. We're here when you need us.
EKL we are here for you, and welcome. Remember, if you type anything any question you have in the search feature, you will likely find an answer. And just ask, there is so much wisdom here.
EKL - I think most of us gave up at first. I know I sat around for 2 years until someone here said something like 'waiting for him to die'. It hit me, that is what I was doing 'sitting around waiting for him to die'.
We live in a motorhome and were 'workampers' traveling around working in RV parks/campgrounds for our site and some wages seeing our country and meeting great people. He could no longer work but I could, so we packed up and I started again first becoming 'snowbirds' and doing 'Quartzsite' that we had always talked of doing. Then I found workamper job just for me. This job I am may be my last which I really dread but leaving him alone while he tinkers around the MH scares me. I can always tell what he has been into - usually my desk. My fear is that even though I don't think he remembers how to light the stove he will play with the knobs and turn the propane on. As cruel as it may sounds, if he died that way it would be far better than this disease, but we have neighbors that an explosion could hurt and this is my home - everything I have is in here.
Journal, read here, whatever it takes and try to figure out where your thinking is. You have a lot on your plate, a lot to deal with.
Coco, please know that you are a wonderful person.
I laughed at one of your comments about somebody's mother having Alzheimer's and it is not the same. As Gord progressed, I got so tired of people telling me that they knew what it was like. Their Aunt Mildred or Uncle George or the man down the street had it and they knew all about it. One day, a social worker said the same thing. I am sorry to say that I let her have it. I told her that until it is her husband who has it and she is living with it 24/7, she doesn't know a damn thing. She stood there looking stunned and finally stammered, " I will never say that again. I didn't realize how thoughtless it was." I wonder if she did say it again.
Thanks to all your comments. Right now I am on the receiving end of support but hope to give back. To many of you I am in the easy stage. My husband is still mobile. He is playing tennis and thinks he is pursuing a new job. The way he was "let go" was cruel and heartless . This added to his anger and frustration. From my research and watching my mom deteriorate I can tell what is to come and my anticipation is driving me crazy. I am still working full time. I never thought I would say work is my heaven but it is. Yes I am guilty of wishing for his death or mine ASAP. I feel like life has ended anyway. As for my mom she is in NY and we are in Bethesda,Md. I have fought with my dad for years to move or at least move her. He almost came through and I had a contract for him to sign. i purchased sheets,towels, bedspreads,shower curtains,pillows,and priced out furniture. Then he pulled back and refuses once again. I go to NY at least,once a week to check up. My mom has a health care worker 7 days but not 24/7. I am lucky to have my daughter, her husband and 2 little ones near by. Even though she is a doctor she cannot face the problem head on. I am also the babysitter often. The kids are the only light in my life but they are also work. We redid our wills last year. I am the one who pays bills and now I am taking over taxes. Thanks for your advice LFL. This is the first message board I have ever written on since lurking has been my MO. It looks like this was a good choice. Thanks Again
Welcome EKL You are not alone in your feelings. I am also fairly new ( I started this thread). My DH is also still mobile and able with my help to participate and enjoy his life. He is not aware of hi dx. Tells all his brain is not working right.
But, like you at first I just felt there was no life worth living for either of us. Of course, I was and am the great pretender around him. But, slowly I have been trying to enjoy the time that is now.. It takes a great deal of work to do that. However, I decided I couldn't waste this time. Sounds like we have some commonalities. We also have children and grandchildren nearby. That adds joy but I agree sometimes I just don't have energy . The emotional strain is what is most draining about this disease.
I early on knew I wanted and needed help to get through . I am open to all suggestions and all assistance. These are what helps me : an understanding therapist , a local AD support group, lexapro, this website, supportive family and Helpful, caring lifetime friends. I am very fortunate and grateful. Doesn't mean that everyday I don't feel anew the pain of seeing my DH change and worry about the future. Sometimes I am downright resentful that this happened and destroyed our retirement plans.
I can't imagine having a parent and spouse to care for! Try to hang on , live a day at a time. That is about all we can do sometimes.
Tell us a little more about your D H if you ever want to . By the way , I live in New York.
My DH ( although I hate that term because there is not much Dear about him to me he is more of a B&C -Ball & Chain).
He was very accomplished and respected in his line of work. He can be very funny to others but not to me any more. What do you want to know about him?
Tell me about yours.
Where in NY?
I have a therapist & Lexapro. All the AD support groups meet in the day when I am at work.my brother is In CA - no family locally. No caring lifetime friends - those I thought were so disappeared.
We live in Staten Island, not far from Manhattan or Brooklyn.
My husband is 65 and I am 62 We Are both retired from New York City Jobs. I was a teacher so retired at 55. So glad we had some good years before this dx. My husband 's main symptoms now are no short term memory, spatial problems leading to no more driving ( very difficult for him to accept) , confusion, language and speech difficulties, jerking ESP in his sleep, loss of math, reading, spelling skills, loss of initiative. However, fortunately he is still very emotionally connected to me , our family and friends. He has been diagnosed as moderate AD atypical.
When was your husband diagnosed? What symptoms does he have? Is he aware of his diagnosis? Is he alone while you work?
My husband is 66 and I am 63. I am a school library media specialist at a boys high school.my husband has big problems with short term memory and finding words. He has problems on the computer which he expects me to fix at all times. He thinks he can run a school again. He keeps sending out resumes and applications. He is in denial about having AD even though the dr. has told him many times. He just wants to think he just has a memory problem. I believe it is called anosagnosia. He refuses to label himself or go to any kind of support or group. He is volunteering and can do some small errands. He wakes up from naps or in the middle of the night totally disoriented. He gets very angry. They just put him on some lexapro but he objects. The driving thing will happen soon. Not only will that destroy him and make him even angrier at me it will probably be the thing that will make me have to stop working. He was diagnosed 2009. Yes he is alone while I work.
EKL My husband seems further along but had same symptoms of anger directed at me for a couple of years before dx. Realized later it was mild AD stage then. I was in denial and blamed symptoms on other things. He was retired so job performance didn't force me to face it. The anger was very difficult to deal with. After dx, he was put on sertraline and that has really helped to control his anger and frustration. He was reacting to his fear and confusion. The word finding has progressed and makes conversation hard. Sometimes, I can't even figure out what he wants to say.
I have found that he totally takes his cue from my reactions and mood. When I was in denial, I would get upset when he asked same question over and over and tell him. That would escalate his anger. It s very hard but I now have learned to take a deep breath and calmly respond to him. It takes a lot out of me so I needed to learn to find ways to take care of me too.
It's good that he can still go out and feel useful volunteering. Are there any things you still enjoy doing together ?
What is dx? I only enjoy the movies because I don't have to feel embarrassed and we don't have to talk.He has an odd sense of humor which I stopped appreciating years ago. I enjoy being with the kids but he can feel like a 3rd. The girls are 5 and 16mos. The five year old said last night when we babysat "Grandma you do all the work and grandpa doesn't do anything." Hmm how perceptive.
dx - diagnosis DH - dear husband but I prefer hb for husband On the left side of the home page, if you scroll down there is a page of all the shortcuts we use here.
EKL--I recognize so much of my own situation in your postings. My husband was let go from his job in 2004, put on Lexapro and spent many hrs sending out resumes and hunting for another job (he even got a temp job that lasted 1 day, he couldn't learn the computer program the firm used, and never returned). In 2005 he was dx with EOAD at the age of 60. It has been a long 8 years since then; for the last several I've been conducting a support group in the Baltimore area. I know you posted that you work full-time, but I would say it's worth taking off a few hours once a month to attend a group near you. (My group has a member who is a professional and attends on his lunch hour--comes from downtown to our suburban location). I found that building a support network, including contacts at the Alzheimer's Association and other members of my group, was one of the most helpful things I did. After taking care of Steve at home for 6 years, I moved him to an ALF in 2011 and have been able to rebuild my life since then. Based on my experience, you are at the most difficult part of the journey--when he still realizes (to some degree) that his life isn't going the way it should and you're dealing with his anger and frustration. Although the hands-on caregiving increased over time, it became easier for me as Steve's awareness of the terrible reality of AD became less and less. This website will be a great help to you, as we can share our "on the job training" tips that will help you cope.
P. S. Don't fight the anosagnosia--it's a losing battle. Eventually it will become your friend (and your husband's). Who would want to know that they have AD? It's actually one of the few humane aspects of the disease.