New to this page and new to dementia care. Any advice?
My mom literally was diagnosed with dementia three days ago so I am trolling the web for information. Her next neurologist appointment is in three days, where the doctor plans to begin treatment with alzh medicaton.
Between now and then I get the unenviable task of breaking the news of the diagnosis to her. Three months ago mom suffered a moderate ischemic stroke on the left side of her brain, verified by cat scan. At that time he said he also suspected the onset of dementia, based on the cat scan and wanted more testing. The Neurologist scheduled an EEG and determined the presence of dementia on the left brain ( the right side too unreliable to read due to the stroke damage) all this is relative greek to me but he seems on the up and up.
Has any one else here seen this progression of dementia following a stroke?
My mom has always been a hand full to say the least, she is 79 now. But her behavior in the last two months has gotten out of character. She lives alone in a senior living apartment building and I check on her daily but she calls me nonstop all day (and night too at times).
Mom has gotten stronger as she recovered from the stroke and is mobile with a walker but the confusion, trouble with words, and mild visions at night (sometimes) has not improved at all ! Her hand writing, which at one time was very nice is awful now.
Mom has been a bit on the paranoid side her entire life but she can be downright nasty about it now. I let this slide as i realize its driven by fear.
I'll be checking this page often in the future, I just needed to write this down some where and get it off my chest.
thanks
A QUESTION: What purpose is served in telling your mother about the
diagnosis?
I've never had that conversation with my mother and don't intend to. Why upset her and yourself? When Mom expresses concern about her memory failing, I just reassure her it's all right, no harm done, and besides that's what she keeps me around for, to fill in the gaps. This always makes her smile and by that time her mind has moved on to something else.
Good luck!
Please set the rules of engagement yourself. She cannot do it and it would be all about HER and to hell with you. Doesn't hurt to be proactive.
Gather all assistance you can, from family, government, caregivers, etc.
Do the best you can to see to her care--but that does not mean doing it all by yourself until you can't remember who you are or what your life was like.
Listen to your instinct/ intuition and do not deny your ability to reason and stick to your guns about your boundaries.
Get plenty of sleep, water, exercise, venting, personal time that is not encroached upon by mother. Try not to get resentful or sarcastic with siblings who don't get it. Some do and some never will. Every dog has his day. Mark my words.
It can be healing and a good lesson for your growth, if you believe in that aspect.
If your situation turns out to be even 10% more positive than this warning: Congratulations!
God Bless you, and your family. Take care;) xo
The days ahead can be very blessed...but it is also heartbreaking to see them struggle with the day to day life needs....being very real...you will cry a lot..you will laugh a lot...emotions will be like a long roller coaster ride that never ends...the family will find reasons not to help...(or so goes mine).... I keep a journal that helps me vent, keep up with things and remember all the blessings mom still brings even now...it is not easy..but with lots of prayer, patience and love you will get through will great grace....try to enjoy the journey...as much as you can...will say a prayer for you....blessings to your Mother and you.
With dementia the description "long goodbye" is unfortunately very true. We grieve a little every time we are with my mom. As to how to cope, try to get good support. My sister and I share everything and my husband is a compassionate listener. This has helped greatly.
People with dementia become like children except that they know fear. And it is very frightening what they are going through! So try to understand why she may be doing things, like calling you often. Comfort your mom and make her feel secure.
But, also, don’t let the diagnosis take over your life (although that is hard to do). Don’t obsess with trying to maintain things exactly as before (her eating, cleaning habits, etc). Things are going to change. Don’t sweat the small stuff, which there will be plenty of. Get help for the home/health care issues and try not to do it all yourself.
That brings me to my most important advice: Spend as much time as you can "enjoying" your mom. Spend time together. Reminisce, play music she enjoys, do little projects together, let her help you do chores (even if you have to redo anything she did later). Make her feel normal and secure. Just enjoy your precious time together.
Fast forward 6 years and they now say she does not have AD but she did have a brain stem stroke. Over the last , I would say, 5 years she has steadily declined physically but her memory was good up until just this year. ( have just started noticing some memory issues but not too bad). She cannot write anymore- that was one of the first things to go and she cannot read very well now. As of , um, 2 years ,maybe. Her eyes are OK - it is the message the brain is getting, I think, that is messed up. She is wheel chair bound now but can walk just a bit with extreme support. Balance was one of her first issues. She has trouble talking- whispers and she chokes on liquids- in the last year. The doctor just told her yesterday that she will regress more rapidly than a typical person her age because of the damage to her brain stem. She is often dizzy and says she feels drunk. She is on blood thinners and cholesterol meds for the stroke.
I don't think her personality has changed all that much. Not like a person with AD. I think she is still very much her natural self just fractured.
I am not a full time caregiver to her. My Dad is but I try and give him breaks. He is not a natural caregiver and loses patience with her. And she is OCD- but always has been just worse now that she is not active. It can be very frustrating. So my husband says (I have it too ;0)
No,really, my Mom gets things in her head that "have to be done' and will not let up until it is done. She also seems to have an absolute desire to keep my Dad from sitting down. I have been there and he will have finished a task she wanted done (feed the dog, say) and his butt is an inch from the recliner and she starts up again.--"feed the cat" and he will yell-'WHY DIDN'T YOU SAY THAT WHEN I WAS UP???" it is a circus! I swear she does it on purpose!!
So that is my Mom's story.
Blessings to you and your Mom!! Come back and keep us updated or just to say help or vent.
This site is fantastic to vent fears and terrors. Is good. My wife was diagnosed Alz this last feb. we had a preliminar diagnose of cognitive syndrome moderate about 3 y.a. and I began to observe her vey carefully. Steadelly she was having gaps of memory, soft. socially most of the times was not noticeable.Since during the last 6-8 months it began to be noticeable. Some family members very carefully mentioned it. As to warn me of something maybe wrong,
At the end of the year I was decided to define the condition, and in february it was confirmed as Alz. both clinically and neuro-psychological. Definitive.
Even if I had a strong indication, it was a shock, for weeks and weeks I cried and studied alone. And began taking care of us.
We are sort of alone, we live in a country diferent from mine, hers. That was an arrangemente we decided at marrying almost 40 years ago. She has a sister, living in the same building, that has opted for not being very close. I supuse is out of fear, fear of haqving the same, fear of having to have unwanted responsabilities. Anyhow, I feel alone.
The first thing I did was to select our closest friends and family and tell them via Net, of the situation. Some had disapiered others had being marvelous and are giving us support. But... there is a great but... for how long? They I am sure won´t be close for years, most will disapear. I believe we have to develop new circles, more appropiate.
Another topic debated is about tell them or not. In Alz, is useless, they will forget almost inmediatly, my wife when reading something about asks and gets anguished. For a shorto period. What is the use of having had them several moments os anguish. I have opted for the angle way, to deviate the topic, or mentioning somethig else. And she changes. For my wife works better. In this site I am reading some letters from a med. who has a diagnosed moderate Alz. he understand and comprehends. Is his profesion. Is diferent from my wife. I won´t tell her more.
Information: There are many authors, among them I would recomend Dr Kübler-Ross, at least some of her proposals are dsequate, but they are more to a situation of grieving and death. In another author. Dr, Pauline Boss, I founded very solid bases for our sad situation, she proposes an ambiguous grieve. More suitable to our problem in which the mind is going and going, but the body is here. Present. The person is present, but the mind is desapearing, and is not the person anymore.
Hope this servs you and send you my moral support and prayers
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