She will ask me the same question over and over dozens of times and if I am not present she will call me 40 to 50 times a day. She will not stay home and has a "I don't want to be alone" problem. Attention span is maybe five minutes or less, and she cannot tell time or apply time to appointments. If a care giver is supposed to be there at 9 am, she starts calling that person as soon as she gets up, like 6 am. Cannot do "wait" at all. Her only reference to time is RIGHT NOW. Is all this common or does she have other issues?
I would think this would be the first course of action once these behaviors started.
She may need to be medicated.
Also, while it would be 'good' to identify what is going on with her brain, in some ways personal to you, your behavior will need to adapt / change accordingly regardless of the diagnosis, i.e., if she's calling you 50+ times a day, regardless of the reasons she is doing that, you will need to change your response / automatic behavior.
Do you have a therapist or professional you can go to for support?
This would be important for you right now. So many families / spouses are forced into this unknown territory and have no language, skills, or knowledge to handle it. It isn't YOUR or anyone's fault. People are not equipped nor trained to handle or interact with these health issues - and when they happen, family is in a state of shock not knowing what to do. This is a good site to turn to. In addition, do google TEEPA SNOW and watch some of her webinars. She is the country's expert on the many different conditions of dementia.
Take care of yourself. This is critically important: eat healthy, meditate, exercise - do what you need to do to keep yourself together.
Time meant nothing to her. Getting her dressed was a chore for both of us. Simple things became the wrong thing. She would try to consume her drinks with a fork until I would give her a spoon. She used a fork or spoon to push food onto a knife and eat from the knife. She would try to pour a cup of coffee but had difficulty realizing the cup was full, leaving at least two cups of coffee poured onto the counter. the last time she tried she forgot the cup. She developed a cough and would spit any where or place. I carried a towel to clean up the messes.
She still liked things orderly and would stop me in stores to straighten up shelves. Or she would pull stuff off of the shelf to put into our cart that she had no need for. Most cashiers understood something was wrong and would to me for an answer. She still loved people and would stop to help anyone in need.
Her aphasia was so bed she quit talking and just made a one of two noises. One for help with something and one for her confusion with a task. She could still talk but did not or it might take her five minutes to answer with one word. If sshe knew the word. She started to eat less and lost about 30 pounds. It seemed like chewing was too much work.
I mentioned my concerns to our primary and he took it as simple age related until he ask her some questions and she just laughed. His tests resulted in us being sent to the Cleveland Clinic for simple clock test and a CT scam. Her frontal lobe had shrunk almost a quarter of an inch. She lived less than three years from the date of DX until her passing.
It was a difficult life for me but I loved every minute I was with her. I did find a good source for hiring a companion to allow me to get out for a few hours to do some shopping because life still went on and we needed things.
I think each of us could write a book on the life we have had or are having with a LO and no two books would be the same.
If our lies were taught in college it could result in a new degree program up to the Doctorate level.
You are doing a miraculous job. I wish you the very best and to listen to the advice given here. Return often and and share your life with us.
God Bless you.
I would suggest that you educate yourself on this disease and consult your Doctor. For now live in her world and remember that she must be so scared and confused. It has to be extremely frightening to be lost in your own mind.
Has her mind always worked this way??Dementia is a generalized descriptive about declining brain functioning.
The first sign we saw with my Mom having to repeat things for her over and over. It takes patience for sure. Then some of her fears or suspicions surfaced about fidelity and the fear she was going to loose the house she lived in for most of her life. We were constantly trying to reassure her only to have her bring it all up again.
You need some more help buddy. If you have brothers, sisters, nephews, children they need to come to an understanding about where shes at and where you are. You need to get ahead of this and determine with a close friend or a brother, pastor where your breaking point is when you need to protect yourself. This can have a huge effect on your health and social life.
There will be a time where she stops being so demanding about time etc. She may end up deferring everything to you. This happens later. In my opinion heart medications and many other drugs serve to keep the body alive and have nothing to offer for the mind as it deteriorates. We stopped the heart meds etc.
Again reach out and expand the resources you have around you for help. Goodluck friend.
Several people suggest testing, but your profile indicates Alz/dementia and anxiety, so clearly she has been Dxed to some degree. IF this is totally new behavior, then getting an assessment would be a good idea. It is never (almost never) a bad idea anyway, as conditions like UTIs, under and over-hydration and other medical conditions can exacerbate what she is experiencing.
As one person said, if you've seen one person with dementia, you've seen one person. While there are certainly common behaviors for each type of dementia, not everyone experiences them and/or experiences them at the same time/rate. Different types also have different behaviors/time lines. Again, if this has been a progression of behavioral changes, it is likely just what she is experiencing, however other forms of dementia CAN be present as well.
Most of what you describe IS common to dementia:
Asking the same question over and over
Repeating the same statements over and over
Calling you multiple times a day.
Don't want to be alone problem.
Attention span of a gnat
Cannot tell time or day
Unfortunately the repetitive questions/statements will happen, but we have to learn to redirect/refocus, if possible, onto something else. This short-term memory issue was one of the early signs in our mother and I realized I needed to learn a LOT about dementia! If you can't redirect her, then patience is needed so that you can reply over and over! It gets tedious, but it works (over and over!)
The not wanting to be alone and calling you are probably related. Although we never really had a Dx on dad, he was becoming more "reclusive", BUT didn't want to stay home alone if mom was going out or to run errands. She also started becoming reclusive, self-isolating in a way, finding excuses not to join the neighbors/friends at the senior center, canceling appointments, etc. She had not reached the point of going out/getting lost before we moved her. We planned to bring in aides (started with sanity/med check, one hour minimum, planned to increase as needed, but she refused to let them in - in her mind she was FINE!)
Knowing time and day (or even year!) is also a dementia "feature." It doesn't generally cause an issue for those with dementia, but since she needs to call you and/or the aide when she awakens/is alone, is there any way you can remove the phone (rely on cell only with caregiver) or put it in a location that she cannot get to it? She shouldn't be alone at all (especially if she will not stay "home"), so your schedule and the care-giver should overlap. Others suggested adult day care - is that an option for when you are working?
The last suggestion is perhaps asking her doctor about anti-anxiety meds. A definitive Dx would need to be done before resorting to this, as some types of dementias don't work well with some medications. Generally our mother is pretty quiet, sits reading paper, magazines, peruses the sale flyers and tears out coupons. However, when she got a UTI, she was out of control in the later afternoon/early evening and we had to get Lorazepam in addition to the antibiotics (until the UTI was cured, she still needed the Lorazepam or she'd be ranting she needed to get out, go home, had guests coming and would try all the doors, setting off the alarms.) We keep it on-hand, but as needed only and it is the lowest dose they make. If your wife checks out okay otherwise, she may need something every day. It is not enough to keep her doped up, just enough to take the "edge" off (you indicated she does have anxiety.) I am NOT a big med person, don't take anything myself, but this was an absolute necessity for mom!
I suggest for you to 1. Watch Teepa Snow on YouTube. She is an excellent speaker on dementia and working with dementia patients. I worship this woman and wish someone had told me about her from the beginning.
2. Read the book 36 hour day.
Dementia is not something you want to be surprised by. The symptoms can be hard to cope with. Time to read up.
Keep up your good work but make it a tad bit easier with a little research.
Now go watch Teepa.
If she were "mildly affected" then she possibly would be living in her own home in stead of mine.
And yes, you are dealing with some of the same issues that a parent of a two-year old child with autism may have. Good luck.
She began to mix up and make up words. Helicopter became hellimacopter. Motorcycle was motormasucker. She couldn't give her birthdate for ID.
She became a silent background, would not converse. Date, time, place, had no meaning. She was once a people lover. Then suddenly other people did not matter and she would be angry with someone for no reason. In 2010, she knew that she was broken and gave her aikido gear to the dojo, her radio equipment to the hot air balloonists, voluntarily stopped driving.
In 2011 she asked who our daughter was.
In 2013 she forgot who I am.
In 2015, she was diagnosed with a combination of Frontotemporal FTD variants.
https://www.nia.nih.gov/health/types-frontotemporal-disorders\
She is now an autistic 2 year old. Physically healthy and hyperactive.
Her brain does not interpret input and she can't comprehend language.
She is physically capable, but she has to be hand fed and hydrated.
If not redirected, she will bump into walls and fall over objects.
Her eyes work, but the brain does not interpret.
She is enraged at restraint, constraint, redirecting touch and loud voices.
I have cared for her since 2006, retired early from my career in 2013.
Christy requires 24/7 supervision.
There are no facilities capable and Alzheimer's medications not only do not work, but have adverse affect with FTD.
https://memory.ucsf.edu/treatments-stays/medications-dementia
Do not allow medications until FTD is ruled out. Christy was given Donepezil in 2014 before her diagnosis.
It further reduced her cognition and bent her over for no physical reason.
A legendary 2nd degree aikido blackbelt, she used to stand erect, aware and would glide as she walked. Now she is still stooped over.
There are no facilities that can care for her.
Family left careers and homes in other states to relocate nearby as caregivers.
From 2006 until 2014 even university doctors did not know.
It was just by chance that I was on the phone with a social worker who's husband had suffered and died with FTD.
The lady recognized Christy's whining and growling in the background and exclaimed,
"OMG! That is FTD! My husband died from that. She is miserable and afraid, you must get her help. My husband became violent and I could no longer care for him. He did not survive long in the facility,"
Once I had the term, FTD, the university doctors recognized it, but it was too late to stop the affects of the meds.
This journey has been long and intense, with more to come.
The artlcles on FTD have evolved over the years and I would assume that I am the most experienced as spouse and caregiver for 13 years.
Christy is prone to seizures as her brain is attempting to reconnect. There is no mediciation for FTD seizures, but we found something that stops the seizures, immediately.
The medicine also affords her several hours of quality life, for us also.
She can actually be a hoot, and we laugh much.
It has been 13 years and I can do this for another lifetime.
https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia
My mother also can not wait. She always want to be going someplace, being on the move, doing something. It's not the destination that she wants because when she gets there, she wants to go else where, home for instance, and when she gets home, she wants to go somewhere. She wants to always be on the move.
My mom can not be alone. She's afraid of being alone because she knows she forgets and doesn't understand what is going on. We have to have someone with her 24/7. It makes having a life for the rest of the family very difficult. We hire sitters to take her out several times a week so we can have a break.
The asking repetitive questions again and again and again drives everyone nuts. Every few minutes she comes out and asks: "When are we going?" or "When is so and so coming?" again and again and again...until we take her out.
She wears a bracelet with her name, address and our phone numbers, so that in case she wanders off, someone can identify her and take her back. I haven't been able to find a tracking device that is disguised as a bracelet or small pendant for her to wear. However, someone is with her at all time.
I agree with other posters that your wife should be seen by a neurologist who can test her and give her a proper diagnosis.
People have lost sight of the fact that Senile Dementia was linked to malnutrition back in the 1970's - and with fast foods and everything being available as pre-made and packaged - we are filling ourselves with all manner of chemicals with no nutritional values at all.
Just going back to "square one" and getting proper nutrition helps immensely. My DH was almost 97 when he passed and he did very well until he contracted pneumonia in Nov 2017 and still had it in December until I used alternative medicine (colloidal silver) to cure it when the medications failed to do so. 2 months of pneumonia took his memory; Iodine therapy brought it back with days. But his body started shutting down and he passed May 2018. But he knew me the day he went into the death-coma and I was able to keep him at home right to the end.
You would be surprised how much good a Nutritional Shake is for the elderly. DH was drinking them and for a full year after he passed, Nutritional Shakes kept me alive and healthy when I lost the will to cook and eat.
DH drank Ensure Plus and for the year after he passed, I used Slim-Fast and then Premier High Protein Shakes with the blessings of my family physician. His only stipulation was that I not use any form of appetite suppressant.
My Mom is moderate/severe dementia..Presents with the aforementioned..Now, tells me she eats bland casserole every day(not so!🙂), nurses don’t wake her for dinner, calls me 12+ times a day..
Easier said then done BUT, pls try to give yourself respite time..I learned the hard way, this will take a toll on your health, and compromise your patience level & strength for caregiving..Hugs & prayers to you & your wife.🤗🙏🏻
My wife displays similar behavior.......and was diagnosed a year ago...
She can't tell time......She wanted a new watch...so I bought her one for our anniversary......She will ask me what time it is...I ask her to look at her watch......it is always "about 12".....
She can still use her phone and sometimes she will call me when I am in the same house....
She also does not want to be alone anymore...
Love this site ....
Can you respond, respectfully.
Good luck.
I take care of a woman who has dementia. Anything Goes!!! Everyone person acts differently.
& the family asking,about unusual behavior is the first to know..
God Bless
She should not be left alone for even a short time.
With her diagnosis of Alzheimer's you never know when the "can't wait" will turn into "I am going to leave now" and she may begin to wander.
It sounds like she has a cell phone correct? If so you might want to make sure you have a way to track her with the phone so if she does wander at least you have some way to find her.
You are her "rock, her anchor" so when you are not there she has no concept of where you are, the time you have been gone or when you or someone else will come in and "keep her safe". Sort of like a boat adrift.
If the caregiver can not get there before you leave is there a neighbor that could come in for a cup of coffee and stay there for a "visit" until the caregiver arrives?
Or is it possible that you could change your start work time and get home a bit later?
Another option would be find Adult Day Care that would keep her occupied for the day, she would not be alone and she would get socialization and stimulation as well.
But again I would not leave her alone when you have to leave in the morning so much can happen, she could try to cook, fall, wander off.
outside this difficult (to say the least) burden thrust upon you. Best of luck.
Did these symptoms pop up suddenly?
It is possible to have a mini-stroke, or TIA (transient ischemic attack), and not experience symptoms at the time ... but after-effects may show up quickly after.
To confirm or eliminate this possibility, your wife will need a CT and/or MRI scan. Cognitive testing is needed, as well.
Stroke/TIA after-effects *may* fade over time. I wish I could offer guarantees, but I cannot.
I've been there, or adjacent to there ... and ... I wish you both well! Please keep us posted.