Tomorrow we have a home visit with an occupational therapist and the regular visiting nurse. (They come from two hours away and the therapist flies in from Honolulu)
I received an email with a heads up from our regular nurse, to MAKE SURE that it is obvious to the therapist that Dado is incapacitated so that I do not LOSE my 10 hours a week respite. My God, it is so obvious he cannot really do much of anything. This is my day...
Get him up, wash his face, breakfast, all cleaning, brush his teeth.
Watch him constantly as he sits out on the deck, so he does not fall down. Watch that he does not pick up things and lose them.
Lunch, then the sundowning starts for 3 or 4 hours. He cannot say more than one sentence, and usually that is garbled.
Shave him, get in the shower with him to wash him, help him out dress him. Dinner , pills, chase around , and of course. ALL THE JOBS OF CLEANING YARD WORK CAR ETC.
there is much more as you all know. And in all that, I still work at home, making my coconut candy and crafts so we can keep this home with the little extra I make.
I know they will likely approve again, but, the fact that it may fall through has sent me over the top. Tears that have been stuffed, loneliness, self pity, and feeling generally unwell for the past couple of weeks.
thanks for listening. I feel so hopeless today. It is not just about the respite, but life. What a bloody whiner . Where is the fun silly Patty, the hopeful one, the fun one?
Dear Patty, I'm sorry you're feeling sad today. Wish you could bring Dado over here for a cup of tea, and we could both watch over him as we get caught up on what's happening. Now's the time for a good friend, and although we're separated in distance, I send you my friendship, love and prayers. This too will pass, and you will feel like yourself again.
thank you mary, yes that is what I need , a friend. Since this has all come down, the most hurtful thing has been the lack of caring and love from people, and I thought that I was liked, and loved. The phone is silent, the mail, all of it. Very few care.
I was so sad I even called my Mom up there your way, normally I never do that as she is elderly and has taken care of my Dad for so many years. It was ok though, I told her I needed my "little mummy" as I call her, and at least I know I am loved by her.
Also July 16 is the one year anniversary of my sisters death, they will have a little picnic at Crescent Park in Surrey. I will not be there as there is on one to watch Dado and I am through traveling with him. Next time I am up, we will be sure to connect. You are so kind.
Please consider me your friend too. I am sure you will not lose the respite. But how could you not worry? Wherever we are on the dementia journey, most of us are so depleted, so exhausted physically and emotionally. Then we are often hit with the realization that we are supposed to and expected to have an infinite supply of whatever it takes do do everything for however long that it takes.
I thought that my husband's deline at home was the "worst". But I quickly learned, that for me, snf and alf and now "after" all have their own challenges, to put it mildly.
As I go through things I find cards from my husband. Beautifully written with such kind sentiment. I remember that there must have been times when I did not have to worry each and every day about money. I remember that there were times when I had something to look forward to. And so I wonder now if I appreciated all of those things. I know for sure that I took them for granted.
The first anniversary! I have read that the first anniversary can be harder even than the time of the death because now we realize a whole cycle has passed, that we have lived while they have not and on this anniversary we don't have the shock that may have protected us a bit at the time of death.
Of myself I have learned that even though I thought I was prepared, for both my husband's death as well as my best friend's death(9 year anniversary was in June), I was not prepared. I wonder if anyone can be prepared for a person they love to depart this world. I also believe that time does not heal all wounds; time just passes.
I pray that your sister is in a place where there is no more pain, and no more fear, only joy and that somehow metaphysically she feels the presence of those who love her and those she loves
Sending prayers, affirmations and intentions to you. You are courageous, loving, and have such a beautiful soul.
abby* your words are so true. We are in shock the first year. That is the time friends are concerned and offer support. The second year-when the numbness wears off the pain really hits. I wonder who first said time heals all wounds. Rubbish! You realize that you are alone and that is the way it will be. I can't speak for others because I can't know how they feel. I can accept what happened and if it looks to the outside world that I am healed-well-so be it. At least we are here for each other.
aww coco, this too shall pass. it comes and goes doesnt it? the sadness and depressive feelings that we get when we delve into the future and our present state of life or lack of. i am also confident your respite will be continued and know that you have many friends here via cyberspace. just reach out your hand and someone will grab it. we can never put out the light which is our inner strength and spirit of who we are. the old patty is in there just as our spouses are in there somewhere trapped in their own little worlds. hopefully you will once again feel renewed of spirit and able to carry on. divvi
Coco, I go through these phases. Sometimes the reality of it all hits and I just cry and cry. This especially happens when DH has a noticeable decline. Then I adjust and am pretty much OK until the next decline. When we come here, everyone understands what we are feeling. We're all here for you. Cyber {{{Hugs}}}
Coco, May I add my two cents worth (if it's worth that!) The first time Hospice came to evaluate my DH, I had him dressed so nicely, shaved, shiny, - and I explained to him that the lady was coming to interview him (He understood that) and together, we put on such a show. He shined!!!!! and he was rejected. I had primed him for every question and he stood when she came in the room, (that was not practiced) he had no reason to use his walker, so I had it put aside., --
The second time we were interviewed (!), I followed the advice of a nursing home administrator., and didn't tell DH she was coming. He was bathed and clean, but not dressed up. and when she began talking to her, he decided he didn't have to answer her *&*%$ questions and got up, and tried to walk out of the room. In so doing, he showed he could barely walk even with his walker. He came back in after a few minutes and the front of his pants were wet!, he had a pee accident. He was surly with her, awkward in his movements, couldn't sign her clipboard paper, and didn't understand a single question she asked. Guess what? He was approved. I realized that in my attempt to present him in his best light, I had sabotaged myself the first time around.
Hang in there sweetheart., -- I don't think you'll lose your helper.
Coco....I came on here and found your post. Ohhh...how well I know that panic feeling. Will they approve this or that. I am sure, this is just routine. Look at it this way, these people that do the evaulation need a reason to get paid too. So...try not to deprive them of their paychecks...Joking of course.
All these people that have to come and "evaluate" are usually very nice and they will want you to have what is coming to you....and if they don't approve you then they won't have you to come back to in another six months or whatever length of time it is.....thus they need you as much as you need them..What a waste of gov. money. What did they think?? He was going to get better???
You can tell them what I told the VA social worker here...if I didn't get some help then they would soon have the full care of my dh because I can't do this much longer....It's OK to feel sad and anxious..but, later you will feel so much better...and you might not realize how good it is to feel so much better if you hadn't been so down. Love you and all the others on this blog...I have sad news today too....we all need each other....this DAMN condition.
Judith I am sorry you have yet more sad news. Today as I feel my personal pain, I thought of your writings and how sad you have been.
I am not feeling well and that does not help. I have been dizzy , even upon waking in the morning. Not like me. I need to get checked out, as I now have medical and have not found the time or energy to see a doctor. I know I am overworked, and hope that is all that is wrong.
Also Judith you comment on the "I can't do this much longer", yes even though it has been less that two years this has been going on in my mind.
abby you touched a spot so close to it all too, with your prayers and wishes for my departed sister. SHE WAS THE BEST< she talked to me almost every day on the phone, as she suffered with her cancer, she still listened and did not bully me in any way about my situation.
thank you each of your for posting here, I know you know how much it means to read your kind words. And for anyone that cares , anyone . YOU KNOW, you know, that I know, so many others are worse off. but I still hurt really bad.
I so much prefer the silly roll in honey and ants, bottoms up, kind of person I can be. Yes it is still there, just not constant. And yes, I too, know what I have taken for granted in the past. How I hope to help someone else when I have the strength, from what I am learning.
Yes...yes...yes. Coco...We all have a right to our own feelings. And it all hurts, all the time...from the beginning to end...we are just hanging on to a thread...The rope gets worn out and now for some it is just a thread. But, hang in there and please, please take care of yourself. Your dh needs you so much now. Get to a doctor and get checked out. Probably you are just over worked.
Me. I'm worse off. I have to live with me and I drive myself crazy. Joan wrote about the fine art of conversation with yourself but I've got a frat house circus living up there and I know there are at least two elephants. I can hear them trumpet sometimes mostly in the mornings.
Look these people will either continue or expand your support (fingers crossed) unless they're a couple of orangutans from borneo. If they are use the Moe Metam Manuveour and stick your fingers in their eyes while screaming loudly "EVALUATE THIS!".
By the way, how fast can you run?
I know. I know. But you can always say you're your twin sister. There are at least two people in there anyways. One's a trooper and the other...well the other...has feelings. And that's not good. I know. Believe me I know.
I have been so busy shaving him Wolf that the unibrow you suggested is getting quite prevalent on ME.
Getting quite good at trimming his beard and mustache, I won't shave it all off because then it will be more maintenance...right? Now I realize men have it just as tough as us gals and our eyebrows and fancy haircuts. What a drag shaving a face everyday!
I might literally faint when they are here anyway. That would be a good one I think. Tough old Coco is feeling rather that she has pushed it too much. Sore arms and hands from husking and digging coconut meat. Sore legs from going up the extension ladder to cut branches off the roof. Sore neck from letting the cats sleep with me to curb the loneliness. I like to do physical work, but, I think I am overdoing it. No amount of good food and vitamins seems to take away the exhaustion.
blah!!!!! And Judith is right!! I need to take care of myself, cause my Dado needs me.
The VA nurse, social worker, and the Physical therapist lady from Honolulu were just here for a bit over an hour. Only the therapist is a new acquaintance, I know the other two and they are so so nice.
The therapist did a big exam to do with him, and ordered bars for the tub, some toilet thingy, and a special wheelchair for us to take when we travel, strictly for me pushing him.
I think it was pretty obvious that I need the respite to continue, and do not think they will discontinue it. Also the social worker is working diligently on the 20 day respite in the VA hospital in Honolulu, for early December.
Wolf I never had to say all the things that I do, they asked and also Dado was on his best impaired behavior today. The social worker told me she can see a marked decline since a few months ago.
SO that is done. Now, if I can get myself pulled back together. My sister seems to think my deep blues is a lot from the loss of our other sister almost exactly a year ago. I don't know, but when July 16th passes, maybe the blues will ease up.
Thanks all for listening you are all the best truly the best of humanity.
Glad you had good news with the evaluation....see...I told you it was the evaluators that had their job on the line and they want to be sure they keep it...so they need people to evaluate....In fact, you did good girl, you got new stuff free...kinda of like Christmas in July.
Doesn't matter. It's all covered in that post graduate course Risky Business where Tom Cruise got his start ("the dream is always the same"). Glad things worked out.
And Judith gave me an idea. When it gets dark, I'm going to switch on the christmas tree which is standing in front of a picture window. More double takes than a triple D episode (driveins, diners,and dives) and kind of like Christmas in July.
That triple D - I watch that crazy thing every night as I try to go to sleep. Wonder I don't have indigestion from watching that guy with all that over the top food. Coco so glad for you that the respite is to continue. Sad that our comfort time comes because our loved one is declining. What a life ;(
Coco - You have been such a help to others on this site, making us laugh and caring about how we feel. As much as you say you appreciate this site and what a help everyone has been to you, I think the shoe is on the other foot - you are a help to us as well, and I appreciate you.
I've been going through some of what you've been going through for over six years. It's getting worse for us now in that his memory is going very, very rapidly. I have to get in the shower with my spouse as well and have to shave him. And he lets me! That is a real surprise. He says all of this is humiliating, but he lets me. The shower thing has occurred in the last two weeks. But, it still isn't as bad as it was when he was hallucinating and paranoid.
Your sister died last year. Terrible. I'm hoping it doesn't happen to my sister; she is very ill with a life-threatening illness. But, she is so courageous, I have to be courageous. But if I lose her, especially now, my life will be missing someone I love, need and care about so much. I don't know what I'd do without her. So, if you were as close to your sister as I am to mine, I know how you must feel about losing her.
I hope the VA takes care of you. An extra prayer will be said tonight that they will.
Coco I feel I may have let you down-as I have been so down having just lost my own sister only three weeks ago.I have not been here much to see how everyone else was doing.I have been so wrapped up in my own troubles that I have let my other "family" down. I am sorry Dado is not doing very well.
Betty, I am sure that I can speak for most, if not all, of us that we understand that you have been under a lot of stress the past few weeks & then to have no power for almost a week........well we don't feel that you have let us down. You have just been trying to cope with everything that has been going on in your life & we understand. Just know that we are here for you. We worry then we don't hear from you, but we know that you are thinking of us. Take care of yourself & Paul & we will be here when you have more time. (((HUGS)))
We recently had our yearly review for Medicaid, which covers all our in-home services. After sending in all the paperwork, they requested more information. I faxed that to them—then got a letter saying that DH's Medicaid would be terminated, since I refused to comply with their request for information. Also, they said that DH's status had changed, and he was no longer eligible. Many, many phone calls later, they acknowledged that there had been no change in status, and that the papers they said I refused to send were, in fact, in the file. Then we got another letter saying that his application had been approved, and Medicaid would start on July 1. Since DH needed to go to the doctor, I called to make sure everything was in place. They told me that yes, DH's Medicaid would start July 1. When I pointed out that it should still be in effect from before, they said that they had no record of him receiving Medicaid. I told them I had his card in my purse, so I was pretty sure he had been approved previously! All this after I had walked around with my heart in my mouth for about a week, thinking that we could lose all the help we were getting, without which I could not continue to care for my husband.
I've thought a lot about the feeling of sadness during the last couple of days. Somebody sent me a photo of a friend, and in the photo the friend was laughing. You could see the joy in her face. I can't remember the last time an expression of joy was on my face. Usually when I catch a glimpse of myself, I'm shocked by how haggard and stressed—desperate, actually--that I look.
As this goes on and on, we give up little pieces of our lives, and little pieces of ourselves. We work ourselves to a standstill, taking care of all the things that are necessary to manage when you are taking care of two people. Then we look up one day and look around us, and realize that we no longer have or do any of the things that make life worth living. Why are we surprised that sadness overwhelms us? On top of all of this, we are living daily with losing our spouses. Frankly, I'm surprised we're all doing as well as we are!
Coco, I hope you have a little breather from all the stress you have been under. You really deserve it.
Betty oh dear oh dear it is I who should feel bad. You have not been around and I have not even emailed you. Dear friend I love you so much and am so sorry for your pain.SO SAD you had to lose a sister too, (((((Betty))))) so much love to you.
Bev your kind words mean so much to me. When I am having happy days, I do think of spreading joy, and hope and pray to help others. When we are down...we tend to forget yeah? As for sisters, oh Bev, I was SO CLOSE to my sister Dianna, she was the eldest of 9 of us. (5 brothers , 4 sisters) Thank God I still have 2 more sisters, and one of them I have become very close to since Dianna's death. We call almost every day, and her name is Linda. She has a message to all of you....she says, You are all so cool, and she is so happy that I have you all.
I will be posting a special thread for Dianna on July 16th, not off topic, as she was an avid listener and helper and cared so much when I would call her crying about our life. And this was through her dying of cancer, she still was there for me. Bev I was so blessed to have been able to be in Canada and hold her hand as she took her last breath.
NancyB* I meant to comment on your lovely advice to me. It was odd, when the team was here the Therapist asked Dado to walk up the three stairs to our deck. He got to the second one and then stumbled and almost fell! Good timing, sorry, but you know what I mean. It really seemed to me that all were in compliance that respite was still more than needed, and in fact, seemed quite concerned.
ElaineH yes we love our Betty don't we, and Paul too.
JanK what a MESS with the Medicaid! We really have to keep on things don't we? I am a stickler for copies and calls and bugging people. And your comment about other people, for the first time I experienced that the other day. I took Dado out to lunch to treat him. There was a table with two couples traveling together, I could not help but hear their conversations as they were sitting so close. It was all so interesting and they seemed to be really enjoying themselves. Then I realized it had seemed SO long that we had had a "normal" visit, even though, it has been only a couple of years.
Once again , you all rock , we all deserve special medals for loving our mates so much and trying so hard. I am still sad, though, this is the first day I have not had a dizzy spell for over a week. Maybe it was just a touch of somethin'
Coco, I am blessed in the fact that I actually met Betty & lmohr (Lois). They both live near my son & when I went to visit him Lois & I met for lunch & then another time she had me to her beautiful house & fixed lunch for me & then the last time she had Betty over & the 3 of us had a wonderful talk while my DH sat in her living room & watched TV. Eventually he came in & joined us, but since they knew what to expect it wasn't awkward & they were so kind to him. Sadly we haven't been back to visit our son for almost a year because we are done taveling. I so wish that we all could come over to your beautiful island & meet you too. And because we all understand we would be good with Dado....we'd even help you take care of him! It's nice to dream! Hugs to you!
Coco - one thing I learned years ago is that our bodies will remember anniversaries. October had always been a real downer for me. Towards the end of October I would start getting really depressed which would continue through the month. That is because October seems to be the month when so many painful things happened. Now they don't have the power.
Once you recognize this and acknowledge these events, in time the pain will not overtake so much, will dimenish with time. This year for the anniversary of her death write her a letter and read it to her on the day. Doing both should help in the healing process to where you can make it a time of celebrating her life instead of pain filled day.
Coco, so glad to hear the evaluation is behind you! I am sure they will continue to the respite. You are our little ray of sunshine ☼ , but even the sun is often blocked by clouds. We all have days, periods of time when we tend to suffer more. I am in total agreement that the anniversary of your dear sisters death has a lot to do with the funk you are in. I get deeply depressed in March, the anniversary of my Dad's suicide. Time heals nothing, but with the passing of time, it gets a smidge easier to bear. ((hugs))
Thanks Charlotte yes my sister Linda told me that too, I am hoping that ALL of us, especially her deeply grieving husband Frank will be able to catch his breath after the 16th. She was such a FIREBOMB, a well know interior decorater in Vancouver , her services were well sought out. I used to hate that look when she would visit me..lol...her side eye at the way I do my house.
I am expecting a package in the mail, from Linda. It is Dianna's two dolls that Linda made. The larger one is about 15 years old, it is a replica of her, her alter ego. She gave it the strange name of "Pronto Patty" Anyway it would talk to all of us and sometimes she would even punish it, tape it's mouth, pin it to the wall when it was bad, utter silliness.
Then, when she got cancer, Linda had to make a smaller one, called Baby Pronto. Baby got cancer and she was bald from the chemo...yet another alter ego. They are on their way in the mail now, and I hope they do not suffocate. Linda says Pronto Patty will be in a real bitchy mood so watch out.
Back at you Nikki, I love you dear one. Hope your Lynn is having some good days. I am always so touched to hear about your Dad.
Coco, how precious those dolls will become to you. I am glad your sister is letting you have them ♥
I hesitate to say this because I know the anniversary date is so very difficult to you... but the 16th is the day I am scheduled to have my brain surgery. Perhaps your dear sister will hold hands with my Dad as he watches over me ♥♥
Coco - I would put the dolls away from hb's reach though. There are so many stories of things missing or getting broke. I would hate to hear of that happening.
YOu will be in my prayers on the 16th Nikki, it will be a day neither of us will ever forget. In fact , I am praying now that you come through with perfect results and a quick recovery. Thanks for all you do.
Nikki, I have been away for the past 2 weeks. My first holiday since 2001. I have missed much on this website. I was surprised to hear about your brain surgery. Is it to do with your TIAs? I wish you well and will send strength and prayers your way.
Coco and Bak....I am sorry that things have been so difficult. A very lovely lady gave me some advice while I was on holidays. She has had to deal with a husband with kidney disease who has had 2 kidney transplants as well as all the other things that happen on the journey to that point. Her life has not been easy. She said to me that she tells herself that she will have a cry, have a cup of tea or coffee and then tell herself that she is the only one of her kind and she must be kind to herself and take care of herself. If it worked for her with all she has been through and still has to go through, I can sure give it a try.
May God give strength to all of us as we travel our different journeys.
Thank you all so much ♥ I don't want to take away the thoughts for our dear Coco on her thread so I have decided I will start a thread and share with those of you here who do not know what is going on. ((hugs))