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Younger-Onset AD or Other Dementia
first time having someone take me for groceries etc
(((((((((alz+))))))))) that was not the best of times and I am sorry you experienced all of that. We are here for you as best as can be; picture all of us standing next to your shoulder in support and love. We are with you in spirit.
If you find yourself needing to talk to someone no matter what time of the day or night, the Alzheimer's Association 24 Helpline at, (800) 272-3900, is there for you. If you do make a call, let them know the need is urgent and to please transfer you to a Care Consultant. Very supportive and kind ears and sometimes good ideas to help up through the problem solving. It is a great place to go even just to vent what we are feeling.
Please do continue to write, it is always good to hear your voice no matter what.
Interacting with people is so difficult now that I panic thinking about it.
Everything I say or do or how I look or behave is used as an assesment - and it adds up to be forced into ... my imagination feels these observations of me at bad times will be used to put me somewhere that is more convenient for the world and like a prison psyche ward to me.
Wake up with terror. Managing my dog's new medication is complicated, everything I do to maintain my life alone is rigged and I am now forgetting the rigging.
I don't trust my divorce attorney, my elder care attorney has not responded, no one understands what it is like except for other people with dementia.
Some one told me to walk away from my house and I have not forgotten the advice since, the scenario of leaving a mess and letting someone sell it for nothing makes me ill. I try to think that letting go of everything and everyone is natural, the way of all life, to open myself to feling the freedom of giving it away and I have flashes of it.
But that it is not my choice, that I was forced out by someone I loved who just did not care or was incompetent to make my house my home for awhile before my end day.
I feel so betrayed and I feel so responsible. The extra shoes, the stuff from my eBay vintage clothing days, blankets saved for guests who will never come.
what is it I am supposed to do? My bank closed all offices in the state and I am supposed to copy auto bill pay to new bank, new system. Supposed to sign some tax documents, they make no sense to me. There is nothing that is "supposed to happen" I am at ease with or confident about. Because I can type or share a photo my interent friends think I am doing fine.
It is a relief to not have anyone around disgusted with me talking to myself or struggling with how things function or doing things for me. On Thanksgiving day Keeper brought me food and walked the dog, packed some more boxes while I slept. Even this help felt like a failed to cut him off entirely, to not recognize the danger of letting him in my house again. The hospice nurse lectured me about how he would try to move back in, the neighbors watching me when I am out with dog, they mean well and I can see myself looking out for people who lived here that I watched out for and helped.
My driver called me and seemed to have taken my performances at bank and grocery with good humor, she took no offense. Is coming this week to help me pack up more stuff to give away. The idea of being asked "Do you want this? can this go?" for more than 2 minutes...
I jumped off a cliff. I recall a dream I had with a premonition of how my life will end, I was lost in a vatican style prison and made a desparate escape, jumped off a balcony, rolled down a craggy hillside and ended up on a road. I got up and dragged myself down the road for a long way to find it went nowhere and laid down under a hot sun and gave up.
Can not write stories for "a book". None of what I thought I would get from living alone has happened because I can not make it happen.
That you are here and reading this still helps. Just to know we are all facing our dependency increasing and most of us with uncertain care.
The CBD tincture I have for sleep might help with the anxiety in day time but the dog requires walks and garbage needs to go out, dishes done, medications dispensed - so I endure the daytime. If I did not have CBD oils and cannabis to smoke I would not have had a few months of life left. It gave me 4 years of function, grateful for that.
welcome more advice on letting go. Your kind words make it all real. Be kind, be honest, feed the birds - everything is so temporary
Ugh….my post had some sort of error and vanished. Here goes a repeat.
You have made some big changes. Please do not underestimate that.
I did have some suggestion which might be useful. They are based on the Michelangelo approach to art.
When Michelangelo was asked how he created a sculpture he replied that he simply removed stone until he arrived at the finished piece.
I have applied this approach in my own home.
Get a bunch of boxes. I also use paper grocery sacks.
Place them around the house.
When you see something you know you do not want place it in a box for Goodwill or trash. This will eventually leave you with things you know you want to keep or need to think more about. I was surprised at how much was gone from my house doing this.
Go ahead and pack up keepers stuff that is in your way.
Put outgoing boxes in one place. Preferably a room with a door you can close.
Yes, I have gotten rid of some stuff that I wish I still had but overall this system has been wonderful.
Be patient with yourself doing this.
I keep a list of all automatic payments from the bank and credit cards taped on the inside of a kitchen cabinet. Nest to it is a list of important telephone numbers.
I always go into the bank. That way they know me.
Groceries? I use a credit card. Actually I use a credit card for everything possible so that i have a record of my expenditures.
I hope I have shared something that might be useful to you too.
JFKOC - again you spent a lot of effort responding, I hope newcomers to board see how there are saint angels here who continue to offer advice and comfort after all they learned taking care of their loved one.
I do have boxes half full all over the house. I pick up something, hold it, look at it, set it down. Sometimes it goes in a box or bag.
My house is very small so those boxes and bags are every where and remind me I failed to get stuff out the door.
my dog let me sleep last night and I woke up at 5am feeling better.
My self worth is coming from helping dog have a good winter life, feeding 200+ birds each day and now feeding a cat which has been roaming neighborhood since late summer.
My daughter said, "It's you, the critters and the elements." I guess so.
will spend time today imagining things going away into grateful hands. Keeper's stuff is all too heavy for me to move. He is coming today with bird seed and removing more in winter snow storm.
someone will love this house one day, I will try to imagine that more often and let things unfold. The cat is refusing to be brought inside, must be related to me, I understand.
Wow.....great start already.
Now I suggest combining the boxes and have them removed from your house. Just having them gone will be uplifting. You will regret having gotten rid of some things but it is worth it.
I am doing the same thing here. I try for one shopping bag a day out to the car. Of course I do not reach my goal.
Let's keep thinking Henry David Thoreau and get to Walden.
It helps to think that someone else will benefit from something I do not need. Thank you for that thought.
I think we are all angels here who pass through the information and support they received. It is a spectacular group!
That thought jumped into my head. I am imagining how much easier my life would be without clutter.
Perhaps I keep the clutter because fretting over it occupies time. Now there is something for me to ponder.
Ready to give up.
No way I can get dog out 6 times a day on ice, or shovel deck and steps twice a day.
The husband I am divorcing came yesterday and I have been forewarned that this is bound to bring more problems than the help is worth.
I bought a new tv thinking since I am in bed so much might as well have a tv I can see. The set up was simple to all reviews online.
Hours later I find a review with same problems I was having, could not call support line because I can not keep up with questions over phone and FEAR phones.
maybe will give tv away. ready to abandon the house as someone had suggested. I can not live here anymore.
I have not called the alz support people because I am afraid of interference or who might be contacted, called in.
Going to pack a suit case and call it a day, certainly all I need fits in one suitcase.
definetly technology overload is another factor. I hate the cell phone, computers, and everything so connected. Just the sight of a cable box or chargers makes my skin crawl.
there were days or hours when it seemed people were coming from the Benificent Universe to help me, good intentions, hopes, nothing more.
My children can not come when I need help and I can not afford to live where they do and I still would not have "help" and I don't even want help.
I fed the birds, the cat and th e dog. Sitting here looking at snow and trying to imagine myself someplace, alone, no responsibilities.
typing is very difficult and no pleasure any more. make your life decisions early as possible, even so nothing is certain. takes a lot of love and courage to work this out, maybe I will have a little more tomorrow.
Sounds like a bad morning. Not a good thing. I wish I could come over for a cup of coffee.
Life is filled with ongoing crap. Yeah I do mean crap. The stuff we do not know what to do with, how to fix, which way to go. You have cognitive problems which undoubtedly make the solutions harder but please do not give up....you can adjust to some of it.
You made a huge decision and it has not gone smoothly. I do not think that makes it a wrong decision but the fall out may be more than you think you can handle and you are faced with tweeking.
You need help and being overwhelmed it is hard to know what kind.
1. My suggestion is to pick one small area to focus on. Might be the dog. Can you fence a part of your yard that the dog can get to from a door to the house. I have that arrangement because I am no longer able to do any dog walking.
2. You need to find a handy person. You could consider a high school student who would come several hours a week. They know all about electronics and could set up your TV in their sleep. They could also give the dog a good walk, get groceries and change light bulbs that you would need a ladder to change. Wow. That is really a good idea for me too.
3. If you qualify for Medicaid you can get some help in.
You are doing a yeoman's job and not recognize it.
AAlz+, don't think of it as giving up, but as accommodating your illness. T
YYou are having trouble with your instrumental ADLs. At this point you should be only responsible for your personal care. Consider Meals on Wheels for your food. You may have to re-home your dog. Someone else will have to clean the house and do laundry. Your hospice nurse should be helping you with this. Can you talk with your daughter about this? Stay strong.
when I saw your post I started weeping, you have been here for me since I was diagnosed and your absence really affected me deeply. Back when these boards were lively and full of friends it was a very different place. For me, having the fraud woman who pretended to be living with ALZ and pretending she used Final Exit ,who I considered a friend, when she used my compassion and violated my life marked the end of the comraderie there once was here.
Hardly any posts these days, very few new people. Maybe part of it is other online groups but none of them suit me as our board once did. We had people with history and you didn't have to explain everything over and over.
Thank you for saying it is the disease process and not my lack of gumption.
I am quitting hospice. The nurse (and plenty of others considering how few people are in my life) gives me a look like "why don't you just call for help?" I am at point where being told to DO MORE enrages me. I asked her if she thought I was pretending to have ALZ and she didn't answer. She told me to search for outside services, line up a housekeeper, get a dog walker, "pay someone to shovel snow" etc etc.
She claimed she had worked with quite a few people with dementia before but I don't believe they spoke. Because I type and speak - am not drooling and can walk - she treats me like I'm maybe mentally ill, or just need a cheering on. Infuriates me. Yesterday I asked her, "You think I am pretending? You think I can organize all this?" she stared at me. when I saw that I quit talking and then I stared at the floor and I could not move my eyes back to her face and I had nothing to say.
when I was misdiagnosed with bi-polar 10 years ago they kept telling me to DO stuff too, I told caseworker how I hated using a telephone back then and he forced me to make a call from his office, which I did. But the memory of that still angers me. Also when I was diagnosed the mental health group never said a word of kindness, not apology for giving me drugs that left me with tongue movements, nothing. I should have sued them.
lots of people wanted me to get divorced from the day I got married. I went to a counselor who told me some men just yell all the time like roosters, think nothing of it. I went to counselor who hauled me to women's shelter and they said "If there has not been physical violence, and then you have ALZ... so..." That counselor asked me to say what the date was, told me I seemed to be driving "just fine to her" - all this telling me I could, I ought to, there is nothing really wrong with you. that I am imaging things, pretending.
My soon to be ex-husband claims all our fighting was because I have ALZ. When I was diagnosed he was cold to me. Not one person understands like the people who were my friends on this board did.
I believe because we could not discuss the fraud of SUN - that con artist board member who polarized everyone here, and nothing was done to punish her, expose her, we no longer have extended lively support. When I read members still extolloing her wisdom I want to tell them "She was a fraud!" everytime I think of her writing, "Me no this," and "Me no that" I am enraged. That she had the same mistyping always seemed odd to me but I used to want to be compassionate to all.
so I feel the people who manage our board failed us and killed off the trust that once lived here.
This post will probanly be banned and deleted for referencing the incident.
OK. a week ago I did work up nerve to call the woman to help me, she did come, things are a little less cluttered - but she is having foot surgery and will be off her feet, home bound, for 2 months soon. while she was here she wanted me to tell her what to do, argued with me about me bringing a vaccum up some steps, I heard myself repeating things, I knew I had said the same things to her before, had to figure out how much to pay her, etc etc. when she moved some papers I panicked. Keeper does the same thing, comes in rearranges things, I say STOP! and they ignore me, complicate things further
then you have to direct them, watch they don't get into private things, put things in new places, not understand how - if I could do all that I wouldn't be asking for help.
People do not understand, it isn't hard, is it? they just are trying to be helpful, ALZ to most people is the person humped into a wheelchair staring at the floor.
I lost point of what I wanted to share. as usual.
what is happening is - as I have to instruct and hand hold those who come to "help" I am getting enraged, like I do/did with Keeper the soon to be ex. How many times do I have to explain? the lawyer misplaced my papers? delayed the divorce? I'm supposed to monitor him too? It makes me angry and I sturggle to contain the rage. fail more often now.
This was it : bad memories are 90% of my memories. I don't know how to handle the rage I feel towards my brother sister mother, who betrayed me, who still try to get me to respond to them after being told to f*** off. I am flooded with memories of being attacked. The people who act out old war battles - I get it.
If I did not have cbd oil and smoke cannabis I would be "put somewhere". In storage. Hospice nurse said I was having a nervous breakdown. I said "6 months ago it started." she argued it was because Keeper had been at house moving more stuff out.
anyone else having to explain over and over what they are going through? what would help?
anyone have experience with flooding of bad memories?
I allow myself to feel the sorrow, the fear, the anger and it usually passes but it comes back. PTSD is taking control of me. I even had memories again of my mother trying to smother me as an infant, of all the abuse my family laid on me, the betrayals, accusations. The rapes and assaults, medical abuse, over working, abandoned when seriously ill.
The new cbd oil is high THC and puts me to sleep. I tried it during day time and it calmed my brain but I could not shovel, walk dog, do anything.
If I have a rage I couldbe put on a psyche ward and given anti psychotics. I can not allow more bad stuff to happen to me.
I don't know what to do now. I told Keeper he can not come over again. I gave up everything familiar, it had to happen but now I live in a place I don;t recognize, there is no one to walk dog when I am tired, no car, isolated.
but I typed now so I must be pretending it is as difficult as it is.
this is most i have written in months. that is over for me. abandoned by people who said they would visit or stay in touch. think of getting on a plane and disappearing.
If I were with you I would listen. I would sit quietly or maybe I would scream with you. Someone you would not have to "interact" with.
I must agree with the Hospice nurse (sorry)that your life would be easier if you could find someone who would be helpful to you. You are going to need assistance in order to remain independent. Someone who is a plus not a minus. How that happens I do not know but I think that person, service is out there. Someone who would relax and not try to "fix" but do things your way. Do get rid of those who are an irritant.
Calling mobile meals is a good idea. There are two neighbors on our block who get those meals. While not especially nutritious ( I used to cook them at our church) it is decent food and a person who simply smiles and says hello.
What happened with Sun was destructive. She posts now on facebook with her daughter and granddaughter and writes a blog. She fooled many not just us here but then who is looking for evil.
I hope you are not angry with my response but if you are then go ahead and yell at me. You will still remain in my heart.
I don’t respond much any more as I am tired of dealing with this
place and not because of Sun. Her time will come and so will her family so I don’t
care about them anymore.
I is terrible when you must depend on others as I hate it myself. Especially when they do a worse job then what
we were capable of doing.
I also miss the days where one could speak her without getting attack
or in a fight over a comment made. That part of the reason I don’t reply to
folks any more other then those from the old group.
I have more time now sine my boat is away till next season.
Alz+, I am posting from my new smartphone, not a keyboard, so l won't be able to post much. You become angry because your "helpers" are not helping; they are CLUELESS. It is what it is, they don't know any better. You must let go of your expectations of other people. Focus on YOUR needs.
FFocus on getting meals and on having heat and other utilities. Walk the dog close to the house. It is imperative for you to reduce your burdens! Rest as much as you can.
Iris, you are the best advice giver ever. First things first...focus on getting primary needs met.
Nice to see you all here!
Glad what ever happened happened. How about get on a plane and let the divorce take care of itself or forget about it.
It was your courage that made all of this....you got on a plane and went to California!!!!
JFKOC - I have never been mad at you. Sometimes giving advice that does not appeal to me sinks in days later, sometimes it helps weed out what would work and what won't.
You have been an angel here to all of us and you are appreciated.
My lawyer said I HAVE to show up at 2 hearings. This is very small town court so maybe I could speak to judge and ask if that could be changed. I have no idea how far away February is or March, it feels like years. I will get a suit case and start packing just in case.
Thank God for Iris and her new cell phone! I never gave the alz.org call for help a try so I can't compare, but using a phone is so scary to me (why? who cares, it is) I just wanted to type here and get answer. BINGO. "You can't do ADL anymore". doors open, heaven sings, I love people with brain malfunctions.
I came here to share something and forgot so ...
Michael - there ought to be repurcussions for faking on public boards as Sun did. I took her betrayal to heart because we emailed each other daily for a couple years. We were FB friends. To be suckered like that made me very insecure about anyone else. Also she brought her "be on my side or you are my enemy" tone here, sabatogaed the common discourse we had and punked Final Exit.
I felt partially responsible for her "death" because I had so much compassion for her situation. I doubt anyone is going to expose her, she is now pretending she has autism and carrying on her charade?
Sometimes, in the worst of times, unexpected blessings come . . . . and blessings have found you.
Blessings sent in the form of Iris - blessing in the form of your daughter, "We've got this Mom," - blessing of your very own welcoming dear Hippie who got the ball rolling and who has already prepared your room - a blessing of the lovely neighbor who extended her kindness . . . .
I am looking forward to the welcoming presence in your life of those who love you in the land of no snow or ice and deep caring.
May many more blessings find you - you are loved and cared about.
If anyone is a t fault here about Sun it is me because I worked so
hard to get her back on this site when she had been kicked off. Lets forget
about her and don’t bring her up anymore as she already wasted so much time out
of our life’s.
alz+....I have never felt you were angry at me and if you ever are please go ahead and let me know, OK?
I am just so happy for you. Your news has made the sun shine on a totally gray day here.
Michael... you bear no blame. All you did was what you felt was the right thing to do.
Amen to what Michael said!
Back to Alz+.
"We want you to come back to Dad's. He will clean the spare bedroom for you. Dog welcome. We got this Mom. Will take care of your house. Will you accept?"
These are SWEET words! Alz+; let your daughter take over and care for YOU now. If I might be so bold as to suggest, use whatever equity you have in your house for your own care. Your focus from now on will be to keep yourself COMFORTABLE AND CARED FOR! Let everything else go.
There comes a time when we need help, but we need help on our terms. Alz+, you are still in the + side. You have a wonderful spirit! Keep it going! Don't let the outside world drag you down!
I am using a computer at the library now. Tomorrow I will be leaving for a one week cruise to Mexico. The weather here is cold and WET. There is a storm named "Diego" which began off the coast of California which is supposed to traverse the entire country and bring rain and snow. Be prepared! If I have internet access on the ship, I will post. Otherwise, I'll post back in about a week. Alz+, stay warm and dry! Hug your dog! Listen to Christmas music and keep your spirits up!
I'm on a cruise ship on a real computer with a real keyboard outside of San Francisco. We just sailed beneath the Golden Gate Bridge! Tomorrow to Napa Valley wine country.
There is a difference between ADLs and IADLs (instrumental ADLs). ADLs are taking care of personal needs, such as bathing, toileting, dressing and eating. IADLs are activities that we do in the household, such as shopping, cooking, doing laundry, making telephone calls, and paying bills. At some point, we have to delegate these activities to a responsible, trustworthy person. If not to a family member, then to a professional.
If we live alone, it is best to simplify and automate as much as possible beforehand. This is what I am in the process of doing now. It is very difficult! I am still working on this, and it has been years. But I must carry on.