Elder-caregivers
Related: About this forumI never wanted to come here.......I need it now. Husband is losing his mind....short term memory
has been non existent for a while. How do you handle it?? Im a horrible wife. I yell, I swear, I say stuff and I cant handle what Im going through. Im trying to be an adult, its not working. His mind doesnt really comprehend what hes even going through. He doesnt get it. I dont know what to do. He sleeps a lot, he tires out after making breakfast, he just isnt what he was. I dont know what to do. I cry all the time. I was supposed to get a total knee replacement Aug 3rd ..he was supposed to be my driver to all my appointments, he cant drive now. Dr at urgent care told him he couldnt drive anymore because he couldnt say who the President is, what state he lives in, what his SS# is, or what his birthdate is. We went to urgent care because he was so constipated, they did tests, and all the questions they asked him they decided he couldnt drive anymore, he had to take myralax to clear out his bowel. They did a EKG, an X-ray of his bowel, drew blood and did an MRI of his head. We were there for 5 HOURS. I dont know what to do. He doesnt remember stuff from 10 minutes ago. I just dont know what to do anymore. I need mental help. I need help to handle him, it isnt his fault, its his brain and I dont know how to handle him now, hes sooooooooo different now, and Im damn near ready to give up.
Eliot Rosewater
(32,536 posts)Murphyb849
(603 posts)He needs an evaluation by a neurologist. A diagnosis is helpful to determine if there are any options available to treat this. There are support groups for family members of patients with STM loss. It is incredibly stressful, worrying about them, what they could do, and the extra work and responsibility put on their partner. I am so sorry you are dealing with this, I was a psychiatric nurse working with elderly violent patients many with STM loss until I got long COVID and had to retire. Hugs and hang in there, a cause/diagnosis is the first step.
COL Mustard
(6,883 posts)Your community will have social services. I don't know what state you live in and can't help you there, but there are some national organizations (non-profits mostly) that have that as their mission. Here are some:
https://nami.org/Home
https://www.mhanational.org/
National Council for Mental Wellbeing (no website but a phone number - (202) 684-7457)
You may also be eligible for Medicare or Medicaid assistance. Reach out to these professional organizations...they're here to help.
And good luck. It's a hard journey.
Raven123
(6,037 posts)Dementia is a horrible disease. Keeps you off your game always. The usual rules of social engagement, communication and human relationships go out the window. Sounds like you do not have support, but that is indeed what you need. If your husband has not seen a physician for a thorough evaluation, it sounds like he should. Can they improve his memory? Probably not. But hopefully they can guide you to resources that may help the both of you. I know thats not much help, maybe a little.
Been there. Its tough.
deRien
(216 posts)The doctor's office should have a list of organizations that can help you. If you are on SS, I think you can be referred to a therapist for help to cope with your situation. You are not alone in having a loved one developing dementia (there are many types) and there are people who truly want to help you. You might try the Alzheimer's organization for help also. You are experiencing one of the hardest trials and unfortunately, it's not going to get better without getting help for yourself and your husband. I can see myself in your situation in the near future...
JoeOtterbein
(7,787 posts)Let me know the state you live in and I can find the number, if needed.
They have folks that can help.
Phoenix61
(17,641 posts)The hospital where you are scheduled for surgery should have a social worker on staff. Id encourage you to reach out to them. They should know all the resources that are available in your area. And your not a bad wife. Youre just stressed beyond belief.
VarryOn
(2,343 posts)But I can understand a little from his perspective.
For the last 2-3 years, I've experienced gaps in my short term memory. It sucks waking up the next morning not remembering the evening before. I've even read some of my posts here with no recollection. It is especially disappointing when it's out of character.
Early on-set dementia runs in my family. If your hubby is like me, he desperately tries to minimize his problem. He's aware his needle is skipping. He's learning not to talk about last night or the last episode of our favorite Netflix show. And he's secretly rewatching "our last show" so he can be up-to-date and able not to ask the dumb question during the new episode.
I'd just recommend not to call him out on his gaps. I know it doesn't necessarily help you...but, it helps him.
I'm sorry for your situation.
Trueblue Texan
(2,922 posts)Ive seen so many family members who just do not know what the person with dementia (PWD) is going through. They will quiz, cajole, scold as if the PWD is merely being stubborn, or isnt trying hard enough. As if the PWD isnt already embarrassed by his lack of ability to grasp an explanation for the current reality. Caregivers often accuse the PWD of lying because they will quite often weave a story out of whole cloth to explain something they have an unclear or non-existent memory of.
The most powerful thing loved ones can do is to learn about dementia. Learn the stages, the symptoms, the perceptual deficits and behavioral issues and the best ways to deal with them. Knowledge will save you so much energy and grief. The exasperation and guilt you are feeling is normal.
Even though it sounds impossible, you must get some help. Talk to his doctor, church, friends, family members. Never turn down help, even if it isnt ideal. You must plan for what is coming and ways that you can address it. You must get rest or you wont be able to do any of it. Your husbands doctor will be very important in your lives now as you deal with his sleep problems, sundowning and health issues. You cant really make dementia better but you can make it easier to deal with. It is very important for your husband to have something todo. Go to alz.org to gather information and get ideas.
EmmaLee E
(196 posts)Yes, they are embarrassed, yes they are confused, yes they get angry -
But they are also AFRAID of what is happening.
I have found that frequent hugs are good for my husband, and also for me.
EmmaLee E
(196 posts)My husband has been leaving me slowly day by day for at least 8 years.
I get annoyed by his repeating questions over and over.
He now needs help finding rooms down the hall.
Making breakfast? Only getting a glass of OJ. He can reheat coffee in the microwave because I have a sticker on the "add 30 seconds" button.
I am glad that our induction stove has a control system that he can't figure out.
All things considered, I am very fortunate.
I try to think of his repetitions as singing the refrain of a song over and over (and I have been guilty of that most of my life.
He surprises me with quotations of poetry from his youth.
But I realize that HE IS OFTEN FRIGHTENED, and touch goes a long way to help him, and me.
He wants it, and I accept it even if it interrupts what I am doing.
I initiate it many times as day and we both feel better.
I wish you well. Know that others are here too.
badhair77
(4,608 posts)I agree with those who suggested seeing your regular doctor. My husband had stm loss and part of his problem was a uti. He had even seen his kidney dr who took blood and urine samples but it was the nurse with our family physician who insisted on another urine sample that identified the infection. She had worked at a nursing home for many years and had a gut feeling.
I also agree with those who suggested calling elder advocate groups, like an Agency on Aging. They can often suggest resources that may help you. I wish you well. Please keep us updated or feel free to vent.
Moostache
(10,161 posts)We lost mom in Nov. 2020 to COVID19.
Dad has been adrift ever since...then May 2021 he had a stroke and suffered no immediate physical loss of funvtion, but in last 6 months its beginning to mirror my grandmother (dad's mom).
She lost her entire memory for 12 years. No longer knew us or herself. Dad is going swiftly and my brother and sister are going ar each other in frustration.
I just find it overwhelmingly depressing and sad. I wish i had answers but if you need a sounding board hit my DMs. My wife has 25 years of geriatric and memory care experience.
Nothing makes it go away, but a friendly ear can help a little.
spooky3
(36,193 posts)Because I had surgery several months ago and Im worried that the stress and pain are the last thing you need layered onto all you are dealing with.
Do you have relatives or friends who could help give you a breather?
Its a small thing but Wimbledon is coming up and I hope that will help.
LoisB
(8,639 posts)wife. Did the MRI show anything physical going on in his head? This information is California but I'm sure wherever you live there should be something similar.
Locate your nearest Area Agency on Aging, the local chapter of the Alzheimer's Association, a California Caregiver Resource Center, or visit the Family Care Navigator (www.caregiver.org/family-care-navigator) to find support groups, organizations, and services that can help you.
Tetrachloride
(8,447 posts)no cheese
less meat
more apples, apricots
Easterncedar
(3,519 posts)You are NOT horrible. What you are going through is torture. Its awful and exhausting, frightening and lonely, and of course you lose yourself sometimes. I know what its like. You arent horrible, just human.
Other people here have offered good advice. Getting a proper doctors appointment for him is a good start. I also suggest the Alzheimers association; they offered to try to find me some respite care, even though my sweethearts diagnosis was not Alzheimers. I found an online community of caregivers and people with his disease was a great help. Health Unlocked, based in the UK, is the larger organization, and there are specific groups within that for various illnesses. Having a safe place to vent was wonderful. I think you can do that here, too.
Hang on. There are folks here who care.
MyMission
(2,000 posts)A great source of information is http://www.211.org/
You can just dial 211 in most places to connect with United Way, which in turn connects with many local agencies. The website has a "dial" button so you can speak with someone.
Do you both have the same md? They can be a good resource, for both of you. But sometimes they are more or less helpful or knowledgeable in different areas. Being a caregiver is very stressful, emotionally and physically, and you need support for yourself as well as for him.
When I was a caregiver to my mom, people always asked "how's your mom doing?" But I only recall a few rare times I was asked how I was doing. Sometimes I felt like I was going to collapse, have a meltdown or a breakdown from the stress, frustration, responsibility, and loss of my life as it had been before. Most don't recognize the strain of being a caregiver, including many caregivers. They put the other's needs before their own, give their all until they are depleted, and beyond. You have reached out, and you are not a bad person to complain or vent about yourself and your feelings and frustration and pain. It's healthier to share than to keep it bottled up.
My mother had cognitive dementia, diagnosed after her md referred her for testing at a local memory care facility. She also saw a neurologist. There are day programs and respite care often available in communities, if the person shouldn't be left alone. I had someone come in for a few hours on days I was working, to keep her company, take her out to appointments or shopping or lunch, or help with laundry and light housework.
Many good suggestions on this thread. I learned about 211 from a social worker I knew who dealt with the elderly population.
Wishing you all the best as you navigate this challenging situation.
Take care of yourself.
Trueblue Texan
(2,922 posts)And I also think you are right in that even caregivers dont realize what a toll it is on their well-being and health. I once thought parenting was the hardest job in the world, but after working in geriatric home health for a decade, I now know caregiving is hands down the hardest job of all.
I hope the OP will get help and TAKE whatever help is offered as so many caregivers turn down help if it is less than ideal. Or worse, they dont even bother to seek help because they just dont see how it is possible.
The exhaustion only gets worse as the illness progresses. Learn as much as possible about dementia and start accepting help asap. This is a sad, sad situation and Im very sorry the OP is going though this
Beastly Boy
(11,135 posts)This is the new normal, and it will require lots of adjustments. Think of your husband's lack of awareness of his condition as a blessing to him, even though it's a huge burden to you
It sounds like your husband's condition changed very suddenly. First and foremost, get the correct diagnosis. This is the most important first step. Losing one's mind is different from losing one's memory, and either can be caused by conditions as different as a stroke and Alzheimers. Meds for one memory-loss condition may be very bad for a different memory-loss condition.
Then, you will need some sort of professional help. You are likely unqualified to address your husband's health all by yourself. Besides, you need to take care of yourself. Neglecting your health will not do your husband any good. Check out your insurance. It may cover both a qualified health aid for your husband and medical transportation for yourself. If you are qualified for Medicaid, this may be the best option.
In the mean time, try leaving your husband lots of post-it notes to remind him what he needs to remember on the regular basis, Record voice messages that he can replay as needed. Be patient with repeating the same things over and over.
Most important, don't panic and don't despair.There are many people who go through the same thing you are going through. Their advice may be more helpful than what you might get here. If you can find a support group, they will help you a lot, especially with adjusting your outlook to deal with stuff without getting overwhelmed.
thecrow
(5,520 posts)It wasnt really Alzheimers because it lasted so long and without physical breakdown.
But
my Mom had a hard time with it. She treated it as a phase and thought if she corrected him or argued with him she could jog his memory and he would be back to normal. She felt so alone, having to take over all the responsibilities that he had previously taken care of. Fortunately she was pretty good at doing that, but I saw that she really resented that. Sometimes she would call me in tears. I hope she didnt yell or scream at him. He retained his jovial congeniality through it and I was so glad of that.
When I was 50 I had a stroke and had the unique experience of STM loss. It is truly a loss. No amount of coaxing or berating or anything will get the person to remember. I could, once I could talk again, finally explain Dads side of the coin to Mom, though it is hard to say if she listened or understood. When you cant recall it is terribly frustrating and even more so when your loved one is mad at you for forgetting. There is nothing there to remember. NOTHING.
My Mom lived in fear
she stopped taking care of herself, though she desperately needed a knee replacement. She feared having to be in the hospital. Who would take care of him? It was a burden too hard to describe. She felt cheated of getting old with him, the smart, warm, loving husband she had lived with for over 50 years.
I was so sad for both of them.
Then I found this book.. called Learning to Speak Alzheimers
I sent copies to my Mom and brothers.
One sentence stood out to me
it was that the person with dementia may not remember WHAT
you said but they will remember how you made them FEEL. A person with dementia still needs to know they are important and loved and safe.
Also, worth mentioning here is be gentle if you are telling him bad news. It will send an adrenaline rush through him each time he hears it will be as his first. My brothers didnt understand this when
one time my Mom fell and was in the hospital. He was looking around the house going from room to room and then coming into to kitchen where we all were and asking, Have any of you people seen my wife? (Not so sure he knew we were his children)
My brothers would go into this long speech of how she fell and was taken to the hospital and was having surgery. He was like *gasp* the hospital??? *gasp* surgery????
The color would leave his face and he would go looking for her again. I really jumped on them for saying that. He had a very fragile heart. I said were they trying to kill him?? They were, like, well we dont want to lie to him! Then he was back in the room again, hunting for Mom. Where is she?
I just said She had to go out for a while. She is ok. She will be back soon. He calmed down, and his hunts became less frantic. When he asked again I would say the same thing to him and try to introduce a new conversation, like would you like a sandwich? etc.
All of the above advice regarding Alzheimers that others have given is very good.
Do you have children who could pitch in and care for you if you get your knee done?
Does your community have adult day care?
The people at the Alzheimers hotline reminded me about respite care, to give yourself some time away to take care of yourself. I called them after my brothers left and I was living with my parents for several months after her surgery. It was hard. I convinced them to move into a seniors facility and packed up their house. Sometimes my Mom really got on my nerves, too, but I was glad I had that special time living with them and taking care of them. Mom started slipping away pretty fast, as she had hit her head very hard when she had her fall which resulted in her frequently getting lost and driving very badly. So I told her doctor and he told her she couldnt drive anymore. That could have been very bad if I had told her outright.
We lost both of them 11 years ago, five weeks apart.
Try and read that book I mentioned:
Learning to Speak Alzheimers
its about $10 on Amazon and they have a kindle edition too
which is probably much cheaper.
I hope you still love your husband very much and are being kind to him.
He really needs you now.
If you need us, we are here ! ❤️❤️❤️
a kennedy
(32,066 posts)Also, worth mentioning here is be gentle if you are telling him bad news. It will send an adrenaline rush through him each time he hears it will be as his first. And this
..
I hope you still love your husband very much and are being kind to him.
He really needs you now.
Im having a hard time loving him
..and Im not very kind to him.
Thank you. ♥️
AmBlue
(3,439 posts)Except it's my elderly mother. She's lived with me the past 5 years. Though she had mild cognitive decline when she came here, she could still dress, toilet, and make a cup of tea and breakfast for herself, but she could not drive or understand money transactions. My husband was already long over the situation after the 2nd or 3rd year as my other siblings were supposed to be sharing in the care responsibilities. But that all evaporated, leaving me with full responsibility and my husband with a "part-time" wife.
After a surgical procedure last year, it was like someone flipped a light switch and Mom could no longer dress, toilet or do any of the basic tasks of daily living. She was diagnosed with vascular dementia. As a year since has worn on, she is increasingly confused, but still belligerent and either uncomprehending or unwilling to cooperate. She sees people not there, only knows me very rarely, and can only verbalize half of what she wants to say, and sometimes almost nothing at all. The thing that has pushed me over the edge is the incontinence which has gotten really unmanageable.
For the past year, she consumed nearly every waking moment of every day. Though I want to be everything she needs, I am just one person with a family that includes two kids in college (one studying from home, the other home for summer right now) and two family businesses neither of which I've been able to contribute to in any meaningful way. As I write this I sound calm, but believe me I am at my wits' end and have lost my patience and cool more than once.... like when she wants her tea warmed up for the third time, or keeps getting out of bed and won't leave me alone til I go with her and put her back to bed over and over. There are a dozen other examples. It's all so sad, and so frustrating. But the incontinence is just finishing me off.
I've been on a quest to find a good memory care facility for her, trying to convince family members "it's time" (no small task) and, after visiting a dozen places and asking a thousand questions, finally, finally she moves into memory care next week. As hard as this all has been, I've come to the realization they can do so much more for her than I can, with appropriate activities that are designed to keep her brain active, instead of doing a lot of sleeping. Now I am swamped with all the moving details, on top of all I have to do for her every day and I'm still at my wits' end, but there is now light at the end of the tunnel.
Dementia is a horrible disease and it can break the best of us as caregivers. Please get that diagnosis, find out if there is anything you can do to improve his condition. If not, be realistic about what you both need most right now. There is nothing wrong with asking for and finding help. And you are certainly NOT a bad wife. You must make ALL the hard decisions for both of you now, but be sure that YOUR needs are part of that equasion.
If you ever just need someone to talk to, feel free to message me. Wishing you all the best.
CountAllVotes
(21,066 posts)My husband died 2 mos. ago of vascular dementia.
He was dx'd with dementia in February and was dead in May after he fell and broke his hip.
It was so sad!
I hope you can find tolerance in this journey you are on. Tolerance and love.
I feel like the doctors missed the boat with him as I found a thread on her that I started about old people sleeping a lot!
My god!
It had been going on for years and no one bothered to care enough to do anything about it despite my efforts.
Do what you can to hang-in there if for no one else but him.
May you find peace and do all you can to keep yourself well as you are needed now more than ever!
Take care,
CountAllVotes
P.S. Feel free to message me if you feel the need!
a kennedy
(32,066 posts)Hugin
(34,565 posts)Im on my third go around with a similar situation and its never been the same.
Keep in mind, its not your fault in any way. That you care only means you are human. These things are unfixable, but they are always adaptable.
On the airplane emergency procedures given before takeoff, when they say, put the oxygen mask on yourself first. They arent kidding around. Build, maintain, and use a support network based on you and your own needs. Its okay!
You may find that he has good days and bad days. This will vary. Dont count on it happening. Dont schedule anything around it, just enjoy the good days for what they are.
Its the journey and not the destination.
oasis
(51,703 posts)on this thread. I feel it will be very helpful for my personal situation.
My best wishes to anyone who becomes affected by the stress of these truly challenging circumstances.
Again, thanks.
MorbidButterflyTat
(2,633 posts)It's horrible. and isolating. and devastating.
My heart goes out to caregivers.