Some time back my sister sent me a cd of photographs. I had really looked forward to looking at the pictures, but because of computer glitches today was my first opportunity.
The photographs showed my sister visiting her adult children, visiting my brother and his family in another state, visiting my other sister and her family in yet another state, and both sisters visiting my uncles in two more states. There were pictures at a lake and by the ocean and at other various getaway spots, pictures when they were eating out in various restaurants, and pictures of them at each other’s homes.
Tears came to my eyes as I looked at all the pictures of my smiling relatives. DH and I are not in the pictures. We are no longer included in family visits, getaways and fun activities. It’s like everyone else’s life goes on, and our life has just STOPPED. I think that as far as the grief and loss of this terrible disease, this is one of the biggest losses to me. In addition to the eventual loss at the end of this disease, we have also lost most of the other parts of our lives right now. It’s like we have become invisible to “normal” people. We are going through this enormous experience and they don’t even see it.
Thanks for reading this, even though it's a downer. I just didn't think I could sleep tonight with all this inside me.
Jan-you have hit on the real devastation of the disease. Sometimes I feel we are the living dead. Go to sleep at night and hope to wake up to a real world in the morning-not to be.
Thanks=fully, I have not noticed too much of that yet. It may come a bit later. I sure do hope not. Maybe it already has and I just don't know it. I know we can't travel with a group we've traveled with before. We don't hear from them but occasionally get a blanket e-mail reminding everyone to be sure and take this or that. They just returned from 17 day cruise down the west coast of S. America, around the horn and back up the east coast of S. America. Really wanted to go on that one, but after the fiasco with the Rome trip, didn't even bother.
Our daughter is very good about keeping in touch. She drives up from Portland every chance she gets but the boys are pretty content as things are.
Let me ponder this a bit. Hateful disease, isn't it.
Oh Jan, yes. We can feel so left out. My brother and sister are still able to travel, take fun vacations, etc. Also, seems most of the friends our age still are enjoying their retirement and having a good time. These days, people we have the most in common with are people who are going through something similar.....like the people here. We're even so desperate we plan cyber parties and make up stories. <sigh>
I can relate to your sadness =my sister and her husband have been updating emails from their ship 21day! from lima to rio.all round s america. it sounds lovely, tango dancing and gorgeous scenery. after this one they are planning another one 2wks to the greek isles next summer- i feel badly being envious of her good life but cant help see how others around me still have a life and the ability to enjoy it with their loved ones anytime they choose. that may be the one thing i blindly miss, doing something 'anytime i choose'...who would have thought we'd be this limited in life? sometimes i feel like a captive being held against my will---:)having to hire someone just to go to the grocery store...unbelievable..divvi
Just last week a friend called and was telling about her father who had been diagnosed with a rare Cancer a couple of months ago, since her parents live in a very remote area, they had moved in with her as to be near treatment, Doctors, etc. She was going on and on about how hard it was to have them there and go thru everything. She said several times, I just want a NORMAL life, I was thinking,( join the club, live in my world, etc.) But I kept my mouth shut and just tried to listen and console her in her grief of what was to come (losing her DF whom she was very close to) and what she was going thru having her world rocked. But I still don't think she even got how normal her world is compared to those who caregive dementia LO"s. I know this sounds awful of me, and I am sure his journey has been horrible but I still can't get past how she just didn't get how her words "Normal life"felt to me cause if she said it once she said it numerous times. I understand it was in the moment of grief but geezzzzzzzz! Hello, I/We won't know normal for years and years. I just think people don't get it, how when someone is diagnosed with any dementia that it changes everything and I mean everything. Ok, I vented! Sorry! Rk
Yes, this is a lonely damn disease. I just had to lay it all out for my dh's brother. They just don't see that it all falls on the caregiver to BE EVERYTHING. Life goes on for them....for us it stops dead in it's tracks.....M
In the early stages of my husband's disease, when he could have still driven himself to his cognitive therapist, my life basically ended because his appointments were at the same time as most of the community activities that I wanted to do, and that I had actually started for the community in some cases.
As y'all know, after six long years with this horrible disease, Claude passed away two weeks ago today.
Friends we haven't seen in years (I sometimes wondered if they thought Alzheimers was contagious) called, sent cards, brought food, came to his memorial service etc. I haven't heard from them since.
There is no NORMAL anymore. First as MMarshall said, we had to be everything as a 24/7 caregiver, now instead of a wife, we enter into that stage called WIDOWHOOD. While you are coping with loneliness, a house, bills or whatever, your married couple friends quit calling because the wives think because you're a widow, you will be making a play for their husbands!!! Little do they realize you wouldn't have any of them if they were given to you on a silver platter. LOL WidowERS may have it a bit better because all the widows/single women will be after them. LOL And now with the economy the way it is, there is no more normal as we knew it.
Mary-I am so sorry that your "friends" have deserted you. My friends are all either widowed or divorced. When my leg was casted and I couldn't drive I did ask a married couple to drive me to a meeting we were all going to. I mentioned I would be more comfortable in the front seat pushed way back and was informed she preferred me in the back seat-so there!
What a week so far, my husband decided he would get up at 2:00 in the morning on Tuesday, still trying to find insurance since his 36.5 years service means nothing to the company (Delphi/GM) & is going to cancel our insurance on April 1 unless we pay over $15,000 a year, husband wanted to get up this morning at 3:00, thankfully I talked him into going back to sleep. Now I just received a call from my Healthcare Plan wanting to speak to my husband, explained that wasn't possible, she then wanted me to have him call her, this was all about a weight program that they wanted him to participate in. Of course he is losing weight every month. Finally, I ask this person who identified herself as a nurse, if she realized Frontal Temporal Dementia was a terminal disease & the last thing I was worried about was him weighing too much.
yup it is funny how friends no longer call, would be nice if someone called and said please what can we do for you, ya right, i had pictures sent to me to also made me cry for the life that just stopped dead. We get to go shopping once a week with one daughter, crip we have 4 of them and one son, think they would want to do something with us. oh this made me want to vent to, thanks i needed that
Marygail, don’t be too hard on your kids. My MIL had AD. When they moved to be close to us, she was on meds that basically turned her into a zombie. My FIL took care of her at home for 6 years, until he was no longer able to care for her because of his heart condition. I am soooo ashamed when I think of how little help I was to him. I was totally clueless as to what he was dealing with.
I think our kids are just too involved with their families and activities to pay much attention to what we need. I am so fortunate that my DIL who lives near us is an especially caring and sensitive person.
Lori - I also shutter thinking of how little help I was to my Mom when she was caring for my Dad. He didn't have dementia but he had a dehibiliting heart condition and died at 49.
Children don't understand the situation their parents are in. They're busy taking care of their own families. I try not to depend on my children too much but know they will help if I let them know I need it.
My mother cared for my bedridden father for 9 years before his death. I remember how it irritated me when she would call me at the last minute to come stay with him while she went for groceries or the doctor or whatever. I realize now that she put it off until the last minute because she hated to have to ask. I now do the same thing and don't ask the kids to help unless I just have to and then I do it at the very last minute because I hate it.
i feel like we live on a deserted island. people just don;t want to see the uglyness of it all,some will say call if you need anything,but never ofer to do anything or come visit or just let me get some rest. most people just don't realize what all is involved. i have to pull his pants down,set him on the commode,set with him until i can get him to use it,clean his backside,stand him up,pull his pants back up,wash my hands,lead him to the couch,pray that he will set there,and cover him with his blanket.it wears me out just writing it. how many friends do you think would do that for your loved one,if you needed to go to the grocery of just get some rest. heck,i can't get any family members to help. i think that is why his family don't come and visit,they are afraid i will ask for help,and they want to steer clear from me. the time may come when they will need my help again,and i won't be there for them. jav
Jav ....... my heart breaks for all of us ..... I go through exactly the same toileting issues you are going through as well as dressing and undressing, showering, shaving, brushing teeth, cutting up food, doing up the car seat belt and on and on. You are right, people most likely don't physically present themselves to help because they don't either know how to help, not ever having been a caregiver perhaps, or they feel uncomfortable around someone who maybe has inappropriate behaviour at times, is incontinent, can't speak clearly, is messy when eating etc etc.
What worries me most is what would happen to my husband if I were to suddenly take ill and have to be hospitalized or even worse - what if I just dropped dead in the middle of the floor. My husband doesn't even know how to dial a telephone anymore - never mind knowing what number to dial. Who would look after him in the immediate time? Where would they take him? They couldn't just leave him alone in the house ..... gosh, this really does worry me. Yes, we do have a Son and I have tried to make sure I've put him down as an emergency contact on everything, but just think ..... what if he was out of town or couldn't be reached ..... it's the immediate time frame that worries me and as hard as I try to think this through ..... I just cannot come up with an answer ........ hell, the neighbors around us never even stop by to say hello so I can only imagine they would do a total disappearing act in the case of a scenario such as above ....... :(
Mee tooo.. I posted a long winded thing and it didn't go.. but the main thing is that I'm considering how to get a 'housekeeper' person to start coming in regularly enough so that in the event I can't be here or am in a body cast etc.. DH will be somewhat adjusted to having that person around.
Two of our four children/families live nearby and they are helpful. I'm sure if something happened to me, they'd all figure out how to provide for DH. However they are incredibly busy with their work and activities of our grandchildren.
I try not to call on them unless its something that I can't do. Even so, it is such a relief to have someone take DH for an hour or two to check the pastures or to have someone be HERE so that I can go check on my mom (88 lives alone) about 20 minutes from us.
At this point DH is physically able to go outside and 'work' around our farm. Recently though, he drove away to feed his cows when no one could come help him at that particular moment. He surrendered his license over a year ago and is uninsured. Until now, he has stayed within our fences. But that incident let me know that he'll do it again if it suits him.
I do the same with DW as Bar-bra, except I don't have to shave her!!! :-) and once I put the toothpaste on her brush she does OK with brushing her teeth.
As with Bar-bra and Judy, I am very concerned if anything should happen to me. If she were with me, she would have no idea how to call for help. If she is at daycare, I'm not sure anyone would know where to find her. Our closest kid is a 6 hour drive away, and has 2 small boys with special needs to take care of. The contact daughter lives north of Chicago (we are in Maine) so would be no help in an emergency. Our son is in San Francisco, so would be no help. I have no answers, so I guess I just have to stay healthy and not get in any accidents.
When our kids were little, we traded real written documents with another family, saying that if we were killed in a plane crash or something, the other ones would be their guardians. (do people leave their kids at home and go off on trips without them any more? it was common "back in the day..")
Maybe we should all do the same with other couples near us: put their names as contact person and give them the numbers to call, and do the same for them. The day care, I'm sure, will have records of your daughter, Marsh.. and when you didn't pick her up they could call her but also if they had a local person it might be more helpful. Even the concierge or whatever in the retirement home...
I printed off some documents from some site I found through here awhile back, with all the instructions of who to contact and how, which I keep out on the dining table in plain view. Not perfect. I hate to think of what Diana (new realm) must be going through in retrieving remains, etc, from miles away.
marsh, maybe you ought to consider a move down here to Florida, where you and I could back each other up as fall back caregivers in "what if" situations. Many retirement complexes here in our area, and perhaps less pricey than what you may be paying up there in Maine --and the weather is certainly friendlier, isn't it Joan and bluedaze? And you wouldn't really be getting appreciably further from your kids as far as travel time is concerned. Maybe they'd even visit you more often -- that was certainly our experience with kinfolks visiting right after we moved down here 56 years ago.
I thank my lucky stars every day that we have our son living here with us and helping out with caregiving on a day to day basis, but I'm sure he'd be in quite a quandry of what to do if I was suddenly no longer in the picture. Some years ago I used a piece of interactive legal software to document lots of stuff that someone would need to know after we're gone, even wrote my own obituary for the newspapers, and I guess this discussion is a wake up call that I need to update those documents and make sure our son would know where to find them.
This IS a lonely, terrible disease to have to deal with, especiallly alone with no friends or family in support. Most of the time, it feels like I'm living my life apart from myself....a spirit of myself just looking down at me moving around day in and day out. I look at other people and really don't understand why all the smiling and laughing. What's a vacation? What's a fun day out? I feel like a shell and only get comfort from the hope that one day soon, I'll be in a position to really have another relationship, someone to talk to and share life's promise with. Someday. I promise myself.
Re: Diana (NewRealm)...I feel certain the funeral home will handle bringing Paul home. It is a distance, but they do it all the time. Usually, the hospital calls the funeral home Diana chooses and it's taken care of. I just feel so bad for her. This was the last thing anyone expected. I looked at her wedding picture again...they were so happy. (Go to Search/New Realm/click on her name - for the newbies) I hope these memories come back and flood the more recent ones.
When my MIL suddenly dropped dead from a massive heart attack, much to all ours amazement my FIL ran next door to the neighbors. they really did not understand him, but he was so frantic they knew something was wrong. Point - you never know how they would react if something happens to you - they just may surprise you.
Also - on an ID bracelet/necklace you can add an emergency contact number.
Charlotte, you are so right. I KNOW I need to put those notices on everything. I need to order bracelets, make laminated cards for wallets...what the heck! why not a tattoo. (never mind about that!) We always think we have enough time! This site is a good Reality Check!
My FIL had AD. My MIL had a heart attack. A few hours later, FIL was outside and told the neighbor he thought his wife had died. The neighbor came in right away and she was still alive. He called 911 but she passed shortly after the medics arrived. They called my husband at work and he called me at work. He picked me up and we went out there. It was about 50 miles from here. By the time we got there, MIL had already been taken to the funeral home. FIL had absolutely no idea what all had happened. He didn't realize she was gone for about 2 days. Then it was just awful. My heart just broke for him.
I also worry that if anything happens to me, DH would have no idea how to get help. He can't remember anything for 2 mibnutes. I have gone over the procedure with him but he never remembers. Fortunately, I am in fairly good health. I have a few ailments, but nothing really serious at this time. I try to take good care of both ofus.
It is really a worry. I just have to get those ID necklaces for both of us. One more thing, then I'm done????
Marsh, do you have a cell phone? If so, you need to ask your provider for a new one that has ICE, ( In Case of Emergency) Contact. Mine is all set up and explains that I am a caregiver to my Dh and who they should contact if something happens to me. If I remember correctly, I heard that a emergency worker developed it as he was tired of not being able to contact the injured person family or friends. It was suggested to me, because of our ages. With him being young, if something happened to me outside a car wreck they would probably expect him to follow an ambulance to the hospital. I doubt he would say anything about AD. But my ICE contact has all the info about his age, AD, and who can come and get him. Also when I recently purchased a new truck I got a LOJACK system, it's a theft system, but that's not what I got it for. It has GPS and if he were to take off on a drive they could find him within minutes. But all so, they also have all info in case car is high jacked and I am left hurt and he's with me, they will know to get him help. You might wanta check into the phone service just to the times you are out and about. Rk
After reading all the most recent posts, I'm so confused, I'm back to getting a big tattoo. I have no idea what Rk has, but it certainly sounds like it's got it all. :-) My husband is still able to dress himself and potty..but has no congniton when the phone rings, never answers it, ...and if the caller wants to talk with him, he'll respond, but when finished, cannot hang it up.
If I collapsed in front of his feet, he'd just sit there and look at me..I'm certain. He never wants to go outside, so it would be ages before anyone found me. Recall: he doesn't answer the phone.
Tattoes hurt.....Nancy B, It sounds like we are in the same situation. DH does not want to answer a phone and I don't think he could dial out. Since he lost his balance outside a year and a half ago he is afraid to go out. It does take care of him wandering off which is a blessing. I need to put my brain to work on this problem and come up with a solution.
This will sound so silly to most of you, but it's something I want to say.
The "call alerts" - (Help! I've fallen and can't get up) that one can wear around the neck are so tacky. They're grey plastic and hang on a string. I wish they'd make them look like big lockets (in gold or silver). In this day of tiny electronics, it would seem they could make them the size of a silver dollar, for instance, and they'd work. Just as I wear a cross most of the time, I could wear that and it would be an everyday part of my wardrobe.
I also wonder if they have a GPS locator that would direct people to where I was when I fell. Or, do they only send an EMS to the home address when the signal originates from there. Anybody know??
Am I alone in not liking the grey plastic do-hickey they sell?
Nothing sounds "silly" on this site. We are all in this together. I agree, I wish they make safety items more attractive. If they made the bracelet like a working watch, it would be easier to get them on a patient. The "call alerts" are only good inside your home so they have limited capibilities. A cell phone would be better if you have a pocket to carry it in. I am eliminating my clothes that don't have pockets so I can carry mine. I, like you, don't know what my dh would do it I collapsed or fell in the house. He can't answer or talk on the phone, couldn't help me up and just to see what he would say I just now asked him the question and he can't even describe anything to do. He just answered my about another subject, so I guess we better check in with someone daily or have them check on us, because there is no help on the homefront. I have my daughters phone number on speed dial on both our land line and cell phone, if I am alert.
Hey, here's an idea that a gourd friend sent me in an e-mail -- might be a partial solution to the problem of what to do if something happened to you and your AD spouse wouldn't have the ability to help you or notify authorities:
I never would have thought of this. PUT YOUR CAR KEYS BESIDE YOUR BED AT NIGHT. Tell your spouse, your children, your neighbors, your parents, your Dr.'s Office, the check out girl at the market, everyone you run across. Put your car keys beside your bed at night.
If you hear a noise outside your home or someone trying to get in your house, just press the panic button for your car. The alarm will be set off, and the horn will continue to sound until either you turn it off or the car battery dies. This tip came from a neighborhood watch coordinator. Next time you come home for the night and you start to put your keys away, think of this: It's a security alarm system that you probably already have and requires no installation. Test it. It will go off from most everywhere inside your house and will keep honking until your battery runs down or until you reset it with the button on the key fob chain. It works if you park in your driveway or garage. If your car alarm goes off when someone is trying to break in your house, odds are the burglar/rapist won't stick around... after a few seconds all the neighbors will be looking out their windows to see who is out there and sure enough the criminal won't want that! And remember to carry your keys while walking to your car in a parking lot. The alarm can work the same way there.
thats a good idea Gchipper! well my 4nite visit with my 6yr old grandaughter went well -DH seems to enjoy her company now and calls her the 'little girl' or boy, much to her dismay:) we colored, painted, made a cake, played old maid which we had to dress my poor lil fat chihuahua as the old maid:) GD loved that! and the dog sat on my lap as we played cards -i think i colored more than her! haha. then we loaded DH dogs and us into car and went to the park and doggies ran and DH sat with windows down while we sat int he grass 15ft away. i decided to show my GD how to do a cartwheel--bad mistake.:))) my 55+yrs didnt hold so well and i went rolling down the hill MUCH to GD delite and DH laughed out loud! even my dogs jumped with glee seeing me look like an idiot. today i am sore and a black wrist..humm..i told her when i lose some lbs we will try again..:) she left today and the house is again quiet and lonely...sigh..back to same ole same ole and poop patrol:) divvi
Divvi, we have someone else called STUNTGIRL, and that's not YOU! What were you thinkingggggg?????????????? :-) I imagine your GD will tell that story to her children!!!!!
Oh, I understand it, divvi. I'd never try turning a cartwheel (never could) but I have certainly done my share of "daring" exercises in the day.
We have this very old cat. 20 years. She likes the breakfast table to sleep on most of the day, and the kitchen island to eat on (we established that for the cats when we had dogs). She jumps 3' from one to the other. 20 years old!! I understand her. She's got gumption, by god!
Divvi, keep an eye on that wrist! You may have broken something! I do admire you for doing a cartwheel! I can make my DH laugh by getting up off the floor (after getting down there to see what he shoved under the bed!)!!! Some of my muscles tell me that they don't like me any more, and others just play dead!!!!!
Sad part is i used to do gymnastics as a young lady:)flips/cartwheels/even parallell bars -i wanted to make the usa team:) so now how could i NOT be able to turn a cartwheel?? duh. didnt calculate the extra 40lbs and weak wrists..haha..nothing broken just maybe a lite sprain.oh yeah, half the family has already heard about the daring feat. my son says he's give 1000dol for a pic of me going head over heels..GD squeals when she gives her take of the event. such is getting old!! yep i am lucky i didnt break my neck instead..double sigh! divvi
divvi, I love you for trying the cartwheel! If you had on a skirt, did you tuck it up under the legs of your panties like the little girls used to do when I was a kid -- I'd almost forgotten about that.
sorry, thank gawd no skirt Gchipper!! -all thats witness to the event is grass stained chico travelers black pants! ladies will know what i mean..haha..i am lucky i had those on or they would have split for sure..whoops..divvi
but yes i do remember tucking the dress in...and all the little boys cooing and on the ground to look up the dresses....i know you were one of them!
It's been a hard weekend here. On Saturday my daughter and her boyfried of 6 years broke up --maybe-- he feels trapped. They have lived together for the last 3 years and she co-owns the house. He told her she could stay and he would go to his mother's but she didn't want to be alone so at 3am on Saturday night I went and picked her and her cat up with whatever clothes and belongings I could get in the car. She cried and was hysterical all weekend and this upset my husband. He didn't really understand what was going on and when he tried in his way to console her he usually said things that made it worse like "why did he get rid of you". They might get back together but right now I feel pulled in two different directions. I don't want my husband's routine to be upset to much, but I also want to help my daughter as I know she is devastated.
She called me from work this morning crying and saying she thought she was having a panic attack and I talked to her till she calmed down and tried to tell her that she needed to go forward and not jeopardize her job as there aren't alot out there.
To top it all off, my husband, who has never really spoken about his FTD, started to talk about his brain shrinking and losing his memories and began crying and shaking. I don't know what to do here. I feel like I'm about to explode into tiny pieces.
Deb, so sorry for your situation. If your daughter has health insurance at work, this would be a good time for her to take advantage of counseling under whatever it is called for coverage. That would take some pressure off you & give her an outlet other than you. Please encourage her to look into her policy & what is covered.
That's part of the problem too. She doesn't have health insurance at work and she applied for a personal policy and they turned her down due to anxiety treatments in the past. Still trying to work that out too.
It is my understanding that if you already have coverage you can transfer insurance companies with a pre-existing condition. If you get a new job that includes insurance they have to take you. It's when you're own that you can be denied.
It use to be you could get coverage but treatment for pre-existing conditions were not covered for 6 months. That is so unfair if they flat out refuse to cover you.