Just want to say firstly how helpful this site is . I am so new to this with Mum. She had surgery almost 2 months ago for cancer . Antibiotics have helped with the UTI . The most concerning thing is the CT scan result which states that she has diffuse cerebral atrophy most marked in the temporal regions which can be seen in the context of Alz. disease. Background white matter ischaemic change.
To me it sounds as though the poor thing has it all . Can anyone please help interpret these findings ?
The behaviour indicates she is in early stage dementia - short term memory loss very marked. The outburts of anger at what she feels is us restricting her freedom is making things very difficult at home. She would like to go back and live by herself in her own home - that's 1 1/2 hrs drive from us .
I have never felt more sad or confused .
Hope you can help, M.
The Temporal Lobe is part of the cerebelum of the brain. The Temporal Lobe is associated with perception and recognition of auditory stimuli, memory, and speech. Atrophy is the medical term for wasting away. It is very common in ALZ for that section of the brain to show reduction. Ischaemic change has to do with the lack of blood supply with resulting damaged or disfunctional tissue because of the lack of blood supply. The indications do point to dementia as do the symptoms you described. Yes, what you described is typical. The loss of short term memory would go along with the damage to the temporal lobe.
Their ability to think logically, reason, and control emotional outburst is also affected. You Mom does not understand what is happening to her. Her world has been turned upside down. She is frightened and wants her life back the way it was. What you need to realize is that it is not the place your Mom is that is confusing her. It is her mind that is confusing her and no matter where she is the same situation will exist. It does sound like your Mom is more in the mid stages than the beginning stages. There is a thread on the home page of this board that will give you the stages of ALZ.
Some dementia patients, like my Dad, slip into their foggy world with very little resistence. 95% of the time he is a happy man even if he can't remember that he just had supper. My Mom on the other hand is fighting this disease with all of her might. She is angry at everything and everybody and she is depressed. She swears we are taking away her freedoms, causing her confusion, and if we would just leave her alone she would be fine. When in fact she was saying the same things when she was home.
Just remember that it is a brain disease. It is not your Mom saying all those things but the disease. That is why they call it the imposter. That person looks like your Mom but it's not acting like your Mom..... it's an imposter.
I am not a huge fan of medicating emotions but in the case of dementia I make an exception. Because their ability to control their outburst and deal with emotions has been impaired many need medication intervents. Antidepessants, antianxiety medciation, antiparanoia medications are all helpful. You need to discuss the behavior with a geriatric psychiatrist or neurologsit to decide which medications would best control her angry outburst and/or depression. It is a trial and error process to find the right medication or the write combination of medications that work best for her. You don't do this for you... you do it so she can be relatively happy again. I have seen my normally sweet well adjusted Mom lay in the yard screaming that she would rather be dead. She has klobbered people with her fist in anger. She has disowned each of her daughters, thrown us out of the will, and told us never to come back. She has tormented my Dad, has screaming fits at the staff, thrown things, and thrown major southern hissy fits with words that would make a sailor blush. A major dose of Antidepressant and a few Antianxiety pills later she is a sweet heart. Then she gets a simple stomach virus that last 48 hours..... and here we go again! Just tonight she told me that she WAS going home. There was nothing wrong with her except she had to live in that place. If she was home she would be fine. So I really do understand what you are going through..... it is NO fun. But it can be done.
There are some legal things you need to do as well. I am assuming it is the same in Australia as it is in the US. Be sure that you, or somebody, has a power of attorney for your Mom so you can handle her financial affairs. She is not able to do this herself and that legal paper will make it so much easier for you. Also be sure you have a medical power of attorney, living will, or medication directive so that you can handle her medical care. Be sure her will is in order. It is also helpful to have your name on her checking and savings accounts. Then be sure you are on her HIPPA form at all medical offices so the doctor will talk to you.
The first rule of being a caregiver is don't argue with your Mom. If you have to bend the truth, nod like a bobble head, or just let her think what she will, you will be much better off than if you try to convince her that she is wrong. If she doesn't want to do something, distract her with something she enjoys and then go back to whatever upset her. She might just do it next time. Remember she has very little memory of what happened an hour ago.
Do you plan to keep her at home with you? Are you ready to deal with this situation 24/7? Do you have help? I will tell you from experience that it is more than one person can handle for long..... and to be honest, it will only get worse. My Mom and Dad (both have dementia) are in Assisted Living. We tried to keep them at home, even with in home help, and it just didn't work out. Is there an elder day care near you that she could go to during the day? Can you have in home aids with her at least part of the day? Have you considered Assisted Living or a nursing home? If not, investigate them now and decide what you want. Even if you choose not to do it now the time will come when you will need it.
Go to your book store and buy "The 36 Hour Day". It is a wonderful book that will give you some insight into what you are going to be dealing with. Read everything you can find on Alzheimer's and dementia. Arm yourself with knowledge. And keep posting here. All of us here have been through or are going through this horrible disease with one or more of our loved ones. This group has been my rock and my sanity. They have good advice but better yet, they have great shoulders, good ears, and they truly do understand what you are going through.
So.... I truly hate that you need to be here but I am glad you found us. Drag up a glass of wine and stay a while. Post your question and vent your frustration..... we all do it and the results are amazing
Hang in there meiko. I will keep you and your Mom in my thoughts and prayers and look forward to hearing from you soon.
There is very little that I can add to deb's very informative answer. I would like to say, Welcome and I'm sorry you have to be here. Its the best place to come to for help, support and understanding.
These wonderful people are my second "family". Certainly my freinds. When things get worse for you and your Mom, and they will I'm so sorry to say, you can come here for any type of help. I often just convey my fears and someone is there who understands. They are always here with very truthfull answers. Sometimes you may not want to hear the truth.
Again, welcome and I understand your sadness and confussion. It will get better. The more you understand the dementia, the more you can help yourself with your sadness. Its all a process that we go through. A rollercoaster ride with huge highs and lows.
Come back often and type away.
unfortunately for all of us, one healthy way of dealing with it is accepting it. Accept that there are things that will be and you can't stop it. Medicines do not cure this it may just slow the progression of how fast it escalates from one failure to another but it will progress nevertheless.
I have a hard time dealing with a sister that is in the state many of those here will tell they they had. Its denial. Its grasping for every shred of the person they were. Making excuses for the person they are and feeling like its their fault when another failure (such as bathroom mishaps) occur.
We are all trying to tell my sister this isn't about her, its nothing to do with her and we don't understand the whys and wheres of the martyr-ism my kids and I see.
I'm trying to get her to have a life whatever life that is but she gave up everything to take care of Mom and I'm afraid after 8 years of not working and no money going into her social security account, that every month that goes by is another month of her not being able to recoup any kind of life when Mom passes. I can not be the fill-in and won't be. I've had a tough time of it myself in many other ways and selfish as it sounds, I can't be there to fill in the hours, days or months after Mom passes. I find myself getting mroe angry by the day when little things come up in my personal life of my own family, and my husband passed away and is not here to support me emotionally or physically. Never mind what's going on next door with her and Mom.
God Bless you and yours. come back anytime and know that we are here with shoulders and experience to share. But it'll be easier for you if you find instead of denial -- acceptance
a) acceptance of what is occurring
b) acceptance of knowing you can not NOR should you do it all by yoursef. If you have siblings or your Mom does, enlist their help -- never mind that their life is busy. I am busy but I allow and support sister spending whatever the cost is to get her through each day. If the money runs out so be it.
c) acceptance to start looking at what resources are available to you (such as home care visiting vs home care live-in versus long-term care facilities.
Great advice Caring. We all like to live in our state of denile but when we finally open our eyes and see the reality, then we can start making it better.
Thank you for that piece of wisdom....
Thank you for your invaluable advice and for sharing your experience . It's a
a sad and difficult journey that we have just begun. However with the support offered here I feel I will be able to manage better. Already i have all but stopped trying to draw her back into my world and when she says that she helped '"save all the trees in our street from being chopped down' I let it go without argument. We no longer inhabit the same world.
During her stay in hospital we were able to get power of attorney before she had the anaesthetic and became confused. The anaesthetic definitely made her worse! A couple of years ago after dad died she added my signature to her bank savings so all that is pretty much sorted.
Today she spent a few hours in day respite which involved an outing to shops and lunch . I was told she enjoyed herself and she parted affectionately from her "new ' friends. I went home after dropping her off, back to bed and fell asleep almost straight away . I don't know how people manage to work and act as carers-
mind I'm in my 60s.
Have to go and get dinner now . Lots of small meals - specially icecream keep her happy.
Interesting note to finish on . Though mum had a fine time today when she got home she was cross with me and said I didn't need to do anything for her in the future . Oh so sad that she no longer understands that she is gaining from these outings or maybe she was just tired?
Love , M
Hi Caring sister,
I felt so sorry for your situation . And here I was feeling a bit sorry for myself without sibs. to help share the responsibility of caring for mum.
I am still trying to get my head around all this and wonder how we'll all cope with what lies ahead. My husband and i still have 2 university student kids at home who are having a hard time with all the tension and aggression emanating from their grandma . It's so hard on everyone and I dread to think things will get worse. That's what I seem to hear all the time.
Let us know how you are going,
Love , M
Hi Chris ,
Thanks for taking the time to reply to my post . I feel that this site is so supportive and shared knowledge is a good thing. I guess we are all at different stages too which helps in a way . I am so new to this and i can tell you it has been a huge shock that mum is in this state having till recently- few months back - done all her banking, kept bills up to date drove her car long distances and now so dependent on us .
Have to get going with her dinner now,
Take care, Love,M
I am glad her respite care went well Meiko. That can be a time of respite for you as well. Yes, it is difficult to do all that needs to be done. As much as we squabble I am glad that I have sisters. Hopefully one day it will be back as it was.... or perhaps better. You did great getting all the legal matters taken care of before the surgery. Keeping up with the financials is a job unto itself. I have been struggling tonight with a check book that would not balance. It turned out to be a simple subtraction error but today I could not find it.
It is best to not even attempt to pull your Mom into your world. It will only frustrate you both. Even if she does get it for the moment, it would soon be gone again. It is so much better just to join her in her world....does it really matter who saved the trees as long as they are there for both of you to enjoy. Much like the imagination of a child don't you thing.
You Mom may have been tired from her outting. My Mom will "put on her best behavior" when she is out in public. I have noticed it is very tiring fo her. Yet she enjoys it. A little crabby tired late in the day mixed with the added confusion of Sundowning make bedtime so much sweeter. She probably doesn't understand the benefits but as long as she has a good time it is good for her and you.
The shock will wear down. I prefer to grab the precious moments, the laughter and light heartedness, where I can find them. I love to be silly with my dad... I always have. We have little sayings that we still repeat. Posolutely, absotivily.... just that much can make me smile. Mom loves to hear funny stories and I always have one for her... even if I have to make it up. It is good to hear her laugh. I leave the dark time for late at night when it is just me and the moonlight. Then I just wonder why... why two such beautiful people have to end this way. Perhaps it was the only way I could have them just a little bit longer.....
It is way past my bedtime but both check books are balance and all four silly little errors have been found, the bills are paid, and everything is ready to go to the post office tomorrow. Sleep calls....
my heart aches for you and your family. I lost my mother a year ago to this horrid disease and my father to an anuerism 5 weeks before Mom. Daddy had vascular dementia also.
Deb has given you good advice. But it is going to get worse and it is going to be hard on your children. It near tore my boys up to see their grandmother deteriorate with this. Having your Mom at home may be more than they can handle, and it will certainly be more than you should consider doing on your own. Martyrism isn't pretty, nor is it one of the socially acceptable suits these days! It can near kill a marriage and damage your children in the process also. Plus it will just about ruin your health while you are trying to take care of your mother. Guilt is a common emotion that we all suffer from, so don't feel like you are the first. As my son would say, Guilt, yup, played the game,done my time, got the shirt.
Please start looking into assisted living options and nursing homes now. There may be waiting lists so you will want to put your name on the list so you are prepared. It is easier to say no-not now, please call back than to be desparately searching for someplace to put your loved one. Full time 24/7 care is beyond the capability of any one person. We were not designed to do this alone. Nor should you expect yourself to do this. Nursing homes are set up to give care round the clock, to support your loved ones, to give meds, to nurture them, to feed them, to care for them, to change messy underware, to bath them, which you will be coming to, to entertain them..and they do it with humor and grace because they don't do it for 24 hours at a time. They are on shifts. They go home come back refreshed and alert. THings that you can't do when you are the sole person taking care of your loved one. This is a herculean task that you have stumbled into through no fault of your own. We all have looked into the eyes of our own and wondered where they have gone and why they have left us alone and lost, It is not fair nor is it right, for them or us. That rabbit hole is very deep some days and it is very twistly and I wish that it had not swallowed my parents up. And why can't it make more sense? I was suppose to have a mother to laugh with and to enjoy her first great grandson. It just wasn't suppose to be like this.....
Lots of wonderful opinions here from those who have been through it. Do what is best both for your mother and for you, not forgetting that being at home all day withut social contacts except the busy family may not be as enjoyable a life as being in a place with lots of new friends and doing a variety of activities provided by the nursing home. My Mom had a lot of good times during her 2 year stay ...from bingo to guessing games to a bus outing to a local zoo, a concert by an Elvis impersonater (everyone believed he was the real thing, having forgotten his death!) meals just right for her, help in every way any time of day or night, and not feeling ''oh I hate to be a burden on you..."
Having a few places in mind, or on a waiting list, is an excellent idea. "For later."
There is a great deal of sound advice born of experience. We have started to look for AL.There are some places for low care but high care has long wait lists. Plus there are expensive bonds to pay .The first place we visited requires $ A350.000 thats more in US $. Another place asks $A450,000 so selling her house becomes a necessity and in this economic climate she will lose out significantly. We are visiting a hi care place tomorrow for Alz. patients but I don't think Mum qualifies. The low care has a 5 yr wait list!!!
We are so glad this day respite could be the answer even if its for a short term and a few hours a week 'Small blessings gratefully received.
Take care . Love, M
Hi Martha ,
Thanks for your thoughts . We are just feeling our way .Day respite though tiring for mum especially in this hot humid weather( northern Aussie summer) hopefully will help us all survive the stress that comes with this shocking disease.
Glad to hear those check books balanced ! What a pain having to do the finances, Luckily dear husband has taken on that task for me though amazingly mum's math skills are still awesome. She went off today for another session at Day respite and left with her new friends after big hugs( for friends). Yes she does seem more relaxed in their company than I would have ever thought possible.
I just hope she keeps up her fluid intake with this very hot weather . It felt quite like dropping off our kids at kindergarten when they were little and wondering if they'd be ok
I am so glad your Mom had another good day a respit. It is nice to have friends to hug! I am sure the staff is aware of the need for hydration and makes sure they get liquids. I agree that it is like dropping off the little ones at day care. You have the same concerns.
Mom's math skills were the first to go... especially the ability to subtract. My first clue something was wrong was when she stopped doing her best friends bookkeeping. Then she took her tax return to an accountant. She did accounting and bookkeeping all of her life so I knew there was a problem. Later she stopped keeping her check register. Each has their own area of cognitive decline and they can be very different.... yet so similar.
I will take some of your heat. It is getting cold here
With my mom, SHe had run 161 bakeries in 11 states. She quit baking cookies for dad because "all he does is eat them." That was a big red flag for us...poor daddy. He LOVED his cookies.... When Mom stopped baking we were really concerned and I started pushing Dad to take her in for testing. This was not the mother that I grew up with nor the woman who ran bakeries. Nor was it the woman who taught me to bake bread.....Keep your eyes open for the slight little changes that you wouldn't normally catch. Underwear being worn over and over again. Misplacing things, misusing things..such as creams instead of toothpaste. Putting things where they don't belong.....
Ever vigilant.....and you will be in our prayers...and your Mom will be keeping up appearances for her "new friends" because they don't want to appear "off" or "odd". It's amazing how normal they can appear. Then they come home and collapse from the effort that they have put forth..and you bear the brunt of it. Much as little ones get over tired from parties....
My Mom always took care of the finances. I had begun to notice in the beginning she would take a very long time to write out one check for a bill. Eventually I had to sit and do it with her, almost like sitting with a pre schooler and doing there letters and numbers with them. Then at some point she just stopped making out the bills completly. She can no longer put a meal together. She cannot comprehend all the steps to putting it together. Sometimes, so that she feels involved in the process I will say: Mom while I am doing this, how about if you peel the carrots for me. You have to be there side by side and guide her through step by step. She cannot put together the process of making a phone call. I usually have to dial the persons number for her. She has a hard time reading the numbers from her telephone book then actually pressing those numbers on the phone key pad. It involves to many steps for her.