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Old 07-02-2009, 10:24 PM   #1
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When did you know something wasn't right?

I thought this post would give us the opportunity to reflect on our parents/loved ones the way they use to be before they were diagnosed or how they were at the time they were diagnosed. What was it that alerted you that something wasn't quite right?

I've heard it said that some of their personalities come with them into the dementia. I will relate about my mom.
Mom use to be a very outgoing people person. On the positive side she was an easy going and fun person to be around. She loved her family. She was a hard worker and tried to help others. She always tended to be a worry wort to some degree. She loved attention as far back as I knew her but a couple of years prior to her diagnosis all of her negative behaviors became very exaggerated. She became very self centered, she was obsessed with health complaints, she became very repetitious and needed a lot more attention than anyone could give her, in fact she demanded it. At first I thought I was impatient, and questioned whether her behavior was my fault so I made excuses for her. I would always leave her place feeling down and depressed not knowing quite why? She left such a negative impact on me so one day I decided to write down all the times she was downing, and see if it was her or if it was my imagination that she was testing me to the limit? In one day I noted she brought up her ill health 42 times. It seemed that was all I listened to, she was continually bringing up the aches and pains from one body part to another. I didn't understand her, she would be treated and start on another body part. (later found out she wasn't taking any of the prescribed medication as plenty of her RX bottles were in the cupboard full.) Mom would tell us she couldn't take them because of side effects. To us it was a period of frustration, thinking that mom was being selfish and out of control. We even thought at the time she was a hypochondriac. The word around the hospital was basically the same. The doctors thought she might be depressed and wrote out anti depressants for her. Little did we know that she had the beginning of dementia. No one even suspected it, after all we never noticed that her memory was bad, it wasn't really and to have dementia her memory would have had to been real bad, right?. Wrong! atleast it wasn't all that evident to us, she had mild memory loss, nothing significant atleast to us?. Nothing that would make us question that she had a major health problem called dementia. It wasn't her memory going but her behavior was definitely changing.
That was the way she use to be in the couple of years prior to her diagnosis. After the diagnosis, for months she seemed to have lost most of her short term memory and couldn't remember anything but it seems now she is getting some of it back and she sounds a lot like she did just before she was diagnosed. Has she awoken from her state of forgetfulness? Could they have been wrong in assessing her with this diagnosis? Could this be her personality showing in the dementia or is she coming back to her trueself?
Tell me about your parent(s) when did you notice the change, did any have the obsessive behavior prior to diagnosis? Did their forgetfulness alert you or was it something else? Did anyone's parent ever get better?

 
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Old 07-03-2009, 03:12 AM   #2
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Re: When did you know something wasn't right?

My mother was already 91 when I went to live with her, and at first I thought it was all due to old age. She also had the handicap of having macular degeneration, so much of the confusion was also blamed on her eyesight. In fact my sister did not believe or accept that Mom had Dementia at all. Even when her doctor diagnosed it and put her on Aricept.


At first there were small lapses, she asked the same question again, she forgot what you had told her yesterday. Mom was good at covering up - if she didn't remember what she had for lunch at the senior center, she just made something up. Later she would tell me it was something else.

She began to lose money -- went out with $22 and came back with $2 -- this is no big deal, if she had bought anything, but there was no grocery bag. She paid $2 for the lunch at the Center, so where was the rest? Later we found out that she would pay with $20 and go away withut waiting for change; the staff took it as a donation.

Mom forgot to pay her supplemental health insurance bill which she received every 3 months. They contacted my brother by mail to find out what had happened (was she still alive?) and he came over, we searched for it and never found it. We paid up, of course. But that was weird, Mom did not throw out bills or miss payments. After a while she stopped going to the mailbox altogether; I brought up the mail. (we lived on the 2nd floor in an apartment house.)

Then neighbors told me they had seen her trying to open the outer door of another building on another street.

I finally accepted that she had dementia when we were at my brother's house on fathers day, and she was telling one of her old old stories "How I Met Daddy." My father had died 27 years before.

Well, I was shocked when she got all the details wrong and completely changed the story. It dawned on me that not only recent memories were gone, but she could not remember old oft-told family stories. I was devastated. I remember that my brother took her to his summer cottage with them for a long weekend, so I could have time alone to cope with and accept the truth.

To sum up - it was gradual, very gradual -- but always downhill, and it took a LOOONG time before I accepted it.

Aricept made no difference at all, nor did Namenda, both made her sick with diarrhea.

Love,

Martha

 
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Old 07-03-2009, 03:04 PM   #3
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Re: When did you know something wasn't right?

It was very gradual. I'd say several years before my mom went to assisted living; and now presently in a nursing home, there were warning signs that I really didn't pick up on. I should have, but just didn't.

Long story short, mom had hip-replacement surgery in 2005 and it progressed from there. She'd had left post-it notes by light switches on whether "ON" meant to flip up and vice versa. Same with the dead bolts.

I was fortunate enough to not be working at the time so I would either stop over to mom's or call her everyday. Mom became my full-time job..writing on paper the time she was to take her meds...then actually doling them out in sequence for her because she couldn't keep it straight..even with my written, very easy to follow instructions. This, plus all the financial aspect..doing her checks; balancing the checkbook (lots of trouble with that, but who doesn't? is what I told myself).

Finally, when she no longer was able to figure out how to press her life alert button/bracelet I broached the subject of assisted living. My sweet mom always put her faith in me to know that I knew what was best for her and she did end up in a lovely assisted living home. Unfortunately, several months after she arrived she was taken to the hospital w/pneumonia and regressed further to the point where she was unable to walk unassisted due to dizziness. Several weeks of rehab at the nursing home she is presently in convinced me to keep her there as they had a bed available. Combined with further confusion; sometimes nastiness towards me, her only daughter, told me the time came to keep her in the nursing home. She would have cut off her right arm than say some things she has if she was in her right mind. But she isn't any longer.

It's sad that one has to make that decision, but my mom is safe; pretty much happy for the most part; and still recognizes me and most of her family. I'm blessed to even have a mom at her age of 81. We still laugh and chat and a lot of it is nonsense, but it's sense to her and makes her happy and that's all that matters to me.

I would also like to add that the Alz. drugs did nothing but make my mom sick to her stomach..I think she was way past the point of them helping anyways. Also, mom still has some very lucid days where you would never think anything was wrong with her. She talks to my brother on the phone in another state from time to time and she is quick to ask about the weather, how is everyone, give my love to so and so and what's the latest on such and such. Sometimes it's amazing. Then she hangs up and is right back in the confused world. I think the phone call brings some sense of familiarity to her..the wires connect at the time.

Good luck, I know this isn't easy.

Last edited by sunnydaze1; 07-03-2009 at 03:09 PM.

 
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Old 07-03-2009, 04:18 PM   #4
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Re: When did you know something wasn't right?

Thanks Sunnydaze1, I guess it isn't any easier no matter if the onset was sudden or prolonged, the end result is pretty much the same. It's nice that your mom still connects to family matters even if it is in and out.

My mom is having a bad day, a very bad day.

 
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Old 07-03-2009, 05:48 PM   #5
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Re: When did you know something wasn't right?

My mum died at the age of 95 after 9 years in a kind and caring dementia unit where she was loved. She did not recognise me for the last two years but never lost her courtesy, concern...did I have a warm coat etc... and always enjoyed her trips out and coffee etc. I could not bring her home as my men frightened her....they were strange men and the house worried her, even though she had lived with us for a while My brother-in-law is now in this situation and I find that I have learned that there are things in life that are beyond our control. All I can do is ensure that he is having the best possible care in safe hands and enjoying what we can do for him. I am seeing a friend lose her health trying to cope with her partner and the guilt that she feels when she has a short break. She also has other family who need her. I have learnt that however hard it is you just have to let go, but always be there. Work towards being able to answer yes to the question 'Did I do the best I possibly could?'

 
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Old 07-03-2009, 06:11 PM   #6
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Re: When did you know something wasn't right?

Thank you for sharing and for the words of wisdom.

 
Old 07-03-2009, 11:26 PM   #7
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Re: When did you know something wasn't right?

I have tried this twice before and was interrupted. Figured if I waited until after midnight I might get it done

I think it was 2003 Mom started complaining about Dad. He never took her anywhere (he had Vascular Dementia at that time). She was always stuck at home with him. This was very out of character for Mom but understandable because she had been Dad's caregiver for several years. She went to her family doctor and came home with a prescription for anti depressants. We didn't think too much about it. The compaints eventually turned to tears. She did go to the doctor and they tried another anti depressant. During this time she fixed her medical and durable powers of attorney, will and medical directive. She also did major repairs and updates to the house.

In 2004 she stopped keeping books and doing income taxes for her last two clients. She said they didn't get her the stuff she needed in a timely manner and she was just tired of messing with it. OH, and Dad took up so much of her time and attention she didn't have time to do it without him interrupting her.

In 2005 the depression was deepening. She was constantly compaining about something so we decided to spend a week at the beach with her. The second morning we were there she took off for a walk along the beach by herself. She didn't come back. We eventually reported her missing to the police. She was found hours later in a different hotel arguing with the receptionist that she DID have a room there. The two hotels were very similar and we didn't think too much about that either... it was a one time occurance.

In 2006 she got lost coming home from the cabin. The 5 hour trip took her 13 hours. She didn't come by my house as she said she was going to and I later discovered that she has not clean up the cabin before she left. But she had excuses that involved Dad driving her nuts. On another trip to the cabin she and Dad got in a huge fight. I realized at that point she was the one instigating the fights. It was not Dad as she claimed. Caregiver stress? Then she attempted to give a large sum of money to a couple of insurance guys she met at a restaurant. It was a bad investment for her and I stopped it. Later I discovered that they called back and she approved the money transfer a second time. I managed to stop it again but not before stocks were sold that resulted in major capital gains taxes. Then in the fall she swore somebody stole her pocket book. She had to walk home (3 miles) to get the other keys and walk back to get the van and that was why they were late getting to my sister's to go to a football game. She was distraught when she got there and complained that Dad won't drive. he had not been allowed to drive for about 5 years at that point. That was on a Thursday. They went back home on Friday and withing a few hours she was on the phone with me that Dad was "misbehaving" and she never got to go anywhere. Dad had a new prescription for Xanax which he had never taken and I encourage her to give him ONE! Sunday night she called to say she was taking Dad to the hospital because he was having a stroke. I drove all night to get home. The doctor was there when I arrived perplexed because he could find no evidence of a stroke except the fact that Dad could not walk or speak. The MRI was clean. Then it struck me. I went to Mom and Dad's house, got the Xanax bottle and counted the pills. He was suffering from a massive overdose of Xanax. Even after the doctor confirmed what I found Mom was telling all her friends that Dad had a heart attack. I stayed with them the week Dad was in the hospital and for an additional week. I took her to her doctor who assured me she was just fine but I insisted that she be checked out by the Memory Assessment Research Service. I made the appointment and took her. She only went to prove that there was nothing wrong with her. That's when she was diagnosis with moderate to sever dementia consistent with ALZ. AThat was September of 2006

We attempted to keep her at home with a caregiver but she hated anybody being in the house "watching" her. Mom, one of the best cooks in town, couldn't make a simple pound cake and was eating cereal for supper. I couldn't get her doctor to take away her license so she was still driving in town. She would leave the van running in the drive and when it was brought to her attention she would say... but it will eventually run out of gas. That lasted until September of 2007 when she hit the cargiver on consecutive days. Then went into a hysterical tantrum. Ten days later she was in Assisted Living. That lasted until April 2009 when we moved them to a locked unit because of Mom's outburst, wandering, and agressive behavior.

At this time Mom has lost most of her ability to understand what is being said to her. Her speech is now impaired and she has trouble finding the words she wants and making a complete sentence. She is mildly incontinent.... sometimes she remember to use the toilet and sometimes she doesn't. Her temperment is still depressed, angry, confused, and agitated though with medication she is not combative and aggressive.

Mom was an amazing lady before ALZ. She was valedictorian of her high school class. She finished a two year college business degree. She single handed save her bosses business from bankruptcy and took a small inheritance and built an impressive stock portfolio. She worked with abused children as an advocate, worked with red cross as a disaster coordinator, held almost every job there was in the church including the first female representative to Presbytery and chairman of the world missions board. She was responsible for obtaining the organ and the stained glass windows at the church. She also organized the Christmas party for over 100 needy children for many years. She has a wall full of local and state awards for her volunteer work. it all changed so quickly....My intelligent rock of a mother who showed compassion for all... it what she is now.

Love, deb

 
Old 07-04-2009, 09:36 AM   #8
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Re: When did you know something wasn't right?

Deb, I'm sorry. It sounds like your mom was such a lovely personality, an outgoing person before and it's so sad that she had to come to this just like my mom.

Sadly as I read your post, I am reminded that my mom use to make excuses for her behavior as well and I think I need to rephrase that my mom had a sudden onset after her collapse. It seemed like a sudden onset only because we didn't pick up on the little things leading up to it. The signs were there before she collapsed. I think I was in denial about this. In the last couple of years prior to her diagnosis, mom's favorite line was "I don't want to talk about it" or "I don't want to hear about it" Enough!" At that time I couldn't understand why she was doing this, but now I see that the questions or topic at the time was probably too much for her brain to handle, so it was easier for her to stop the topic before it started instead of getting into it.

Her health obsession consumed her and that was 90% of the conversation. No sooner she would get treated for one area within an hour would start on another health complaint. She would phone several times a day saying she lost weight, and when we would ask what she ate that day, she would say "nothing but a cup of coffee". So we would tell her all the little helpful hints how she could buy healthy meals or have someone cater it for her, over and over again we told her. Remember that we didn't live in the same area. The next day she would be complaining about the same thing, she wasn't able to eat, she had no appetite, she needed someone with her to eat. Having a large family that she cooked for before, we thought she was just lonely so seeking attention? We brought in a dietician and that didn't help much but we did find she was eating atleast a little but would forget that she ate. When we came to visit or she would come here, most of the time she really went to town and ate lots.

It never was quite clear why she collapsed? It could have been from the A-Fibs but when you mention the xananx I am reminded that mom was still in control of her meds and was taking lorazepam at the time. She could have taken too much? This was the one medication that she was comfortable taking and may have forgotten how many times she took it in one night?.
Deb, do you think your mom has held up as long as she did because she has your father to tend to? My dad passed away a few years ago and mom picked up doing yard work and was very active physically, emotionally she was a basket case, obessesed and very depressed. I often wondered if she would have progressed so quickly if she still had dad to cook for and to clean for.

After her collapse she returned to her home, in came all sorts of Homecare services, Meals on Wheels, people to cater to her every need and like she said "I have nothing to do" She would vegetate on the couch and sleep until someone came to visit and then complain how bored she was. She gave up doing anything for herself. She gave up trying. I often think if she didn't have all that help if she would have used the brain or retrained the brain to keep going without giving up like she had done, she wouldn't have progressed so quickly into the dementia.

Last edited by dorri; 07-04-2009 at 09:40 AM.

 
Old 07-04-2009, 10:28 AM   #9
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Re: When did you know something wasn't right?

Dear Dorri,

I feel the pain inside of you as you say things like "if she had had Dad to care for" and "if she had not had so much help she could have retrained her brain." Sweetie - the person with Alzheimer's can't retrain their brain! The more responsitbility they have, the less they will be able to cope with it. It was good that she had meals brought in! It probably saved her physical health for as long as it lasted!

Don't go back and second guess everything you did or did not do. It is too painful and does not do any good.

My Mom was my role model and teacher of ''how to cope with life." Nearly having starved to death in Germany after WW I, she got on a ship and landed at Ellis Island at the age of 16. She managed to make her way in this hard world. It took a couple of years to save enough money to get her mother and younger siblings to come over. They started a new life, poor but very happy they had enough to eat and a roof over their heads.

Since Mom had to work all her life, she decided to go to evening high school and then college after she retired. She got her BA at the age of 67. She got her first drivers license at the age of 65. My father passed away when she was 69, and she lived on for 30 years, alone most of that time, until I went to live with her.

She coped, she managed, she had so many friends, was active in local politics and church activities, she wrote letters every week to me, her far off daughter in Europe, and to her other daughter in Ohio, she managed to come and see me at least once every 2 years. She kept that up until she was 89 and the long trip became too hard for her.

When my marriage broke up and I asked if I could stay for a while, she said ''you will be as welcome as the flowers in May.'' She made room for me in her small apartment. At that time we had no idea she had dementia, and as it grew worse it devastated me. Somehow I got through it, with help from my brother and later a nursing home ... but I still think it was the hardest thing I ever did in my long life. Seeing Mom go downhill like that. Horrible.

Now I look back and remember her smile, her ability to cope, her ability to adjust and take life as it came, her strong personality, her love of family, etc. The ''confusion years" are gradually fading from memory. Could we all have done some things better? Yes, I am sure of it. Did we do the best we could at the time? Yes.

Love,

Martha

Last edited by Martha H; 07-04-2009 at 10:29 AM.

 
Old 07-04-2009, 10:51 AM   #10
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Re: When did you know something wasn't right?

Martha, when you speak of your mom it is evident how much you loved her and as I was reading your reply she sounded like a person I would have liked to have known.

Dementia AlZ, what a waste of life for all of our beautiful parents who at one time were full of life and capabilities and love, but now in some that has been reduced to a mere empty shell of who they use to be. That just isn't fair and I keep asking why?

Last edited by dorri; 07-04-2009 at 10:52 AM.

 
Old 07-04-2009, 12:26 PM   #11
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Re: When did you know something wasn't right?

With my mother is was more obvious that something was not right -- when my parents moved into a house they built in the White Haven section of Pennsylvania.

For the first few years, it was okay -- then I noticed differences in my parents when they came back to Jersey to see the grandkids and us. My father would practically beg my mother to stay longer while he went back home. Saying "why don't you stay and visit with the kids longer, I'll come back in a few weeks to get you". My mother wouldn't hear of it!

I found out that in Pennsy, she was doing strange things -- like putting pots on the stove with nothing in it (it was an electric range) and/or upon going back, not being able to find things or know where things were in their own home.

As time progressed, this became evident when she was visiting once again in Jersey. She'd seem "out of sorts" so to speak, not able to find utensils in the kitchen drawers that she had set up, etc.

But that would only last a day or two and then things would be back to normal and we'd all wonder what we had witnessed. And then it was Dad saying how many doctor appointments Mom was making for herself. That she always had a complaint or two -- it was because the doctors gave my mother the much needed attention that she wasn't getting from Dad.

One of the doctors told my Dad that my mother had Alzheimers. Only we saw it was slower than what my cousin was going through at the time. He got diagnosed at 55and was dead by 57 from it. My mother's was a much slower, progressive illness.

My Dad died in 1995 so all this was before that year. When he died we brought her back to Jersey since we knew she couldn't live in a country setting by herself and she never liked Pennsy really -- she only did it for my Dad.

So, my doctor informed me that my mother was better able to manage on her own longer because this is the long-term memory of her life. And it was true. She functioned well -- picking up the kids from school, taking my daughter to gymnastics, etc. And then as time progressed, the kids started telling me about Mom driving the wrong way down one-way streets. Or Mom, turning left when the turning left light was 'red' but going straight lights were green! Stuff like that.

When Mom had her hit and run with a parked car, and we found out about it a month later -- that was when I took the keys away. I noticed tha Mom was not able to remember a word when she was speaking -- then it was one more than one word, etc. My sister who was living with her, didn't notice anything. As time progressed, the loss of word(s), became more evident and she definitely lost the ability to 'write' fluidly or to remember to sign her name to cards, ets.

The in 2003 and 2004 it started to progess a little faster and around that time my husband was diagnosed and my focus was entirely on him. After he died in 2005, things with my mother slowed down again and we just took it a a day at a time with my sisters wonderful care of anticipating every need or want of Mom.

But then in late 2007 and 2008, my mother got violent, starting seeing her dead relatives, asked for her mother, cried out if she saw herself in mirrors, couldn't stay bright sunlight, wouldn't venture out of doors. Starting grabbing onto doorways and banisters to avoid going to day care. She started pinching, slapping, spitting, and kicking my sister. Mid to late 2008, she started to have problems with appetite and dropped weight like crazy. then late 2008, November/December, she definitely had trouble swallowing and had no desire to eat.

By February, 2005, the nightmare was over.

I hate the illness.

God Bless Everyone here and all the Caregivers, in the world.

CaringSister54

 
Old 07-04-2009, 02:45 PM   #12
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Re: When did you know something wasn't right?

CaringSister I don't know how you found the strength to deal with a sick husband and a sick mother around the same time?

Your words are my words, I read your post and a lot is just like mom, I read the other posts and find the similarities. How could we not have known at the time that mom had a problem, is it because I myself have left a pot on the stove and forgot about it. I have turned into one way streets but thankfully had the common sense to get out of there fast. Years ago I hit my own fence while backing out. I'm constantly forgetting to take my medication, how do I know I don't have the beginnings of dementia?

Could we have overlooked it because some of the things they did were very general and similar to what others do occassionally. I'm sure my mom and other moms here must have hid a lot from us and there was a lot more that they did that we didn't even know about. A few times before my mom got sick she would blurt out "I'm not crazy you know!" I never knew where that came from but she knew something was going on. It was usually after bringing up some behavior of hers that she didn't want to talk about.
I regret losing my patience with her in the past but I didn't know. Is that an excuse? That was a lesson learnt for me, I'm not perfect. Even that I do know now that mom has dementia, I'm still not perfect although I am somewhat more understanding and tolerant and stronger to deal with it, because when they put a name to the condition, it explained a lot.

I still get impatient with her when she has real trying days. Dementia is not a one time thing said or done and it's over with. Far from it, it can be repetition all day long, clinging, asking the same questions all day long or repeating the same thing over and over all day long. It's forgetting where the bedroom is, or looking out the window for the neighbours house and not understanding why it's not there, and not remembering she isn't at home. It's about forgetting children and grandchildren's names. We have a lot of "that kid" around here because she doesn't always recall who they are? No sooner do I explain, she asks the same questions and sometimes I repeat the same answers over and over again. Imagine how we felt before when we didn't know what was wrong with her? She was confused, forgetful, and had a lot of added strange behaviors. We were the one's losing it.

Just so unfair. I miss my mom the way she use to be years ago, but I guess you can say we're blessed because mom is still with us, and that means there is room for hope.

Last edited by dorri; 07-04-2009 at 02:47 PM.

 
Old 07-04-2009, 04:31 PM   #13
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Re: When did you know something wasn't right?

Dorri

Because we now know -- we can't regret thinking something or feeling something when things happened in the past and we didn't know.

Dementia in my Mom didn't cause her to hit me as often as she did, it was the way she was towards me.

Yes, I too have left a pot on the stove; one time was boiling baby nipples for the bottles and I went over to Mom's and we started talking and viola! smoke detector's going off, etc.

But truthfully the one way streets, etc is just not paying attention to the surroundings.

I'm okay but I'm noticing things with my sister. At first I thought it was the burden of taking care of Mom and having so much on her mind. She can still remember a lot of things thank God, better than I. But she has -- for most of her life -- tripped over a word or couldn't remember a name. Just recently it happened and she asked me for the name and I said "oh no, you have to remember, you're scaring me" and sure enough she did remember.

I've done things as well but it was because of stupidity and not too much else. My short-term memory was affected by a very late age case of Mono that became Chronic Fatigue Syndrome and I know when i over do things, I'm not as sharp as I usually am.

I think the reason why I am still as sharp at 55 is because I had men in my life who seem to rely on me to handle so many things that I don't have time to let my mind slip. My friend has no sense of direction and I am his navigator.

So Dorri and others. Because we didn't know and truthfully who ever heard the word Dementia or even Alzheimers years ago???? It was senility or 'harding of the arteries' as the buzz words of the time.

There's a lot of things we know now that we didn't then. I was always a sickly child with repetitive cases of swollen glands. Always had blood work done and was always told that 'you're very anemic'. Well, in '84, I had a child and 8 months later was doubled over with what turned out to be gall stones. So I had gall bladder surgery and because I didn't fill the usual criteria of gall bladder problems, they did a biopsy on the stones and found they were 'dead' red cells. A hemotologist came in and said to me "are you Italian?" I said "yes". He asked "on what side" I said "my mother" and he said, didn't anyone tell you that you have Thalaseemia Minor? I said "no, what is it?" he said a chronic -- no cure -- case of chronic Anemia.

My husband then had to be tested because he was also Italian and my son had to be tested and was found not to have the 'trait'. When I had my daughter, she now carries the trait -- apparently it skips around generations.

So see Dorri? When I was younger and going to doctors and they did blood work, not once did they ask or mention anything to my parents about Thalaseemia Minor!.

So again, we can't beat ourselves up for what we don't know or for how we thought or treated someone when we didn't know!.

My mother's other trait that was a sign but it was who she was -- was she use to hide things -- usually money and then accuse me of stealing it.
She hide her 'good' jewelry when we moved her from pennsy. I mentioned this before -- she put it in a tissue, and then into a sleeve from an umbrella that she then rolled and put into the toe of a pair of shoes and wrapped the shoes in towel and shoved the towel in a pants leg and hen rolled the pants up and shoved them into a blanket box!

Then for almost a year and half, she accused the friends of mine who helped her move of stealing it and then she accused me of taking her rings, etc.
When we finally found them, we wanted to strangle her because she was also accusing my sister as well.

So when she couldn't find anything, it was always someone else who touched moved, or hid things.

Caring

 
Old 07-04-2009, 06:17 PM   #14
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Posts: 1,125
dorri HB Userdorri HB Userdorri HB Userdorri HB Userdorri HB User
Re: When did you know something wasn't right?

Thanks Caring, mom is going through this phase now. she is hiding her things, and accusing my sister of cleaning out her drawers and is also saying the nurses took her stuff. My sister was in her room the other day looking for some clothes for her to wear and found some ornaments etc wrapped in her underwear. Today mom was saying a resident accused her of stealing her clothes wanting to beat her up. Who knows maybe mom was taking her clothes thinking they were hers?
Holy tamoly, your mom sure made sure no one would find her stuff. With all the stuff she crammed it in, I'm sure anyone would forget including her.
Do you receive any kind of treatment for your Thalaseemia minor anemia? I had severe iron deficiency anemia before and while it isn't the same, it's anemia and anemia is very tiring.

Take care
hugs
Dorri

 
Old 07-04-2009, 06:21 PM   #15
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Location: charlotte, nc, usa
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Gabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB UserGabriel HB User
Re: When did you know something wasn't right?

Dorri... I spent 5 years working in long term care including dementia patients and was a young adult when my grandmother had ALZ. I knew the signs and symptoms. Yet when I look back Mom was showing symptoms for 3 to 4 years before there was a diagnosis. The thought that Mom has ALZ never entered my mind until the summer before she was diagnosed. Hind sight is 20/20. You can look back and fit events and episodes into a nice little pattern but when you are in the moment you don't see what you see in hindsight. As I said, Mom blamed it on being a caregiver or said it was something Dad did. She self diagnosed with depression which has many of the symptoms of early ALZ. She fooled her doctor as well. I do believe she knew that something was not right because she did all the legal work and remodeled the house. She even said, "At some point you are going to have to sell the house and I don't want you to have to spend time doing this kind of repairs." Her diagnosis was the culmination of a number of episodes that came in the summer and fall of 2006. Even while I was trying to get a diagnosis... I had sister that were still saying, she is just depressed and tired of taking care of dad!

I have no guilt over what I might have missed. Guilt indicates responsibility and intent. We did all we could to help Mom in those early days not knowing what was happening to her. We have done the same thing since the diagnosis. At some point you figure it out. You can't look back and wonder why you didn't know sooner.

Mom lasted as long as she did for several reason.... determination and working off long term memories. They lived in that house for 55 years. Part of it was because Dad was there and she was determined to take care of him at home until he died. Part of it was watching her mother, aunts, and sisters suffer from the disease. She was determined to beat it. She still is. In the moments she was not trying to outsmart it she was denying it.

Her fall started when we hired the sitter. It was a disruption to her routine though it was absolutely necessary. It accelerated when she lost her driving privileges. But again that was absolutely necessary. It picked up speed when she was moved to AL and kicked into high gear when she was moved to the locked unit. But each of these moves was absolutely necessary. I talked to mom on the phone several times the weekend before Dad's overdose. She sounded as coherent and you or me. When she called to say Dad had a stroke I believed her. It was only after I arrived home, assessed the situation, and realized that Dad had nothing to do with it, did my brain kick into overdrive and come up with Alzheimer's. After spending two weeks with her I was sure of the diagnosis but I was absolutely shocked that her dementia was already moderate to sever!

So it is not a sudden onset as you say. It comes on slowly and that is part of why we miss it until that one event takes place that shows us reality with a big slap in the face.

Martha is right. They don't just give up. The damage in their brain reaches a point where they can no longer function. There are millions o pathways in the brain. One by one they are closed off. The brain will substitude a different pathway. It may be a little harder or take alittle longer to do the same thing but the brain compensates as long as it can. Then one day that last handfull of pathways will go away. We see it as a sudden onset when infact it was a slow eating away of one pathway at a time. We just see it when that last one goes away.

Using the brain helps us build more pathways. Mental exercise is something that is recommended but not doing it is not the reason the pathways close up. They close up from the physical plaques and tangles that block their function and nothing we can do will stop that. Remember, Mom still has Dad so if that were the reason for her maintaining then why did she fall so fast?

It is the plaques and tangles that determine how fast they fall and what goes away. We can't change what is Dorri. We can't feel guilty for what might have been only iff. We just deal with where we are now and go forward.

Were there things I might have done differently if I had the knowledge that I have today.... probably. But in those moments I did the best I could with what I knew. That's all anybody can expect of anybody else.... or themselves. It is what it is Dorri and we are where we are in the moment. We don't go backwards, we only go forward. No, I am no super woman and I am sure I have made mistakes.... but my intent was good. That's what matters

Love, deb

 
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