anyone with dementia experience

[bizel]

just accepted my mum is suffering dementia. had excused her forgetfulness, her constant repeating questions, her being lost in the past, her difficulty understanding whether is was morning or night. her sentences, when they come, are broken and full of gaps cos she can't find the words anymore. she's basically happy and for that i'm grateful. won't tell her what she's got. she understands she's got parkinsons disease. but this would really scare her. she used to talk of it early on when she was first diagnosed with p.d. so i know how she would react and her knowing will not make it any easier.

was wondering, is it easier to lose someone to a painful yet relatively quick disease or this slow loss?

thought this year would be an improvement on last year's . aparently not. has anyone any suggestions that can help me focus on the positive? or ways to make it a little easier? not looking for sympathy as there are people out there doing it a lot worse. but would love to know how they cope. would dearly love your thoughts. you haven't let me down yet, please don't now.

[roy m cox]

oh hun get help PDQ my dad is getting the same way go see your family doctor and take her with you but get help "NOW" don't wait pleezzz

[DuckiesDarling]

My maternal step grandfather (I say step but he was all I knew on her side and had been her stepfather since 3 years so was Daddy to her) suffered from Alzheimer's. I watched him die four years before he really died. He worked years for Hillerich and Bradsby making baseball bats and often in his sleep would try to continue that. I know he failing eyesight due to glaucoma but the Alzheimer's would at times cause him to see large holes as we were walking and he'd shove us against a wall to go around it. He took a nasty fall and hit his head and broke his wrist and that was the beginning of the end. I remember sitting with him at night and he would try to turn the lathe with his hands in his sleep. When the cast on his wrist interfered he'd try to get up and cut it off with a steak knife. I'd have to take the knife from him and guide him back to bed. He could whistle like any bird you could name and when they tried putting him in a nursing home for a bit they doped him on Haldol to keep him quiet.

So in the end I was glad he died and didn't suffer longer. Was I more happy to end his suffering or to end the suffering of my family that had watched a good man go through hell? I can't answer that. I just know that he is at peace.

[Hephaestion]

DD makes the most relevant point and that is the tendancy to ignore logical dangers to themselves and to others. Ultimately, they will wander if given the opportunity, they will try to cross major roads believing that they are somewhere else.

You will need nursing help and she will need regular medical review as a doctor/dentist may spot problems that you are oblivious to. You will need container-ship loads of patience and understanding - and money. There will be lucid moments and there will be times of fantasy world.

I 'inherited' a 'loopy aunt' (as I called her) and I kept with her for about 2.5 years. When I was young (ca4 yrs old) she would buy me cowboy and policemen's outfits as, in my mind, a rich aunt. In reality she was as poor as a church mouse and lived in a bed-sit the size of a cupboard.

In the end, she died because it proved impossible to treat her as she would fight her medical assistance. The most rewarding occasion was when I asked her quite late on if she knew who I was and she replied "I do know who you are - you are my friend"

[tenni]

My mother had Alzheimer symptoms as in those days they could only declare it Alzheimer's post mortum from an autopsy. It is a tragic disease as the person leaves you long before they die. They become someone else that you do not know both mentally and to some extent their physical appearance changes or at least my mother's did. It it important to get help asap from the medical profession. I don't know if the Parkinson's also has these symptoms or if you are dealing with a double challenge. Mobility does become a problem and eventually they become immobile but as others have stated they can become a danger to themselves and others. We had geriatric assessment done and today there are suppose to be improved methods to determine if it is dementia or Alzheimers but in the end it doesn't matter.

This is not something that you can do on your own. You need counselling to cope with the journey as well as your mother. Your mother will become a new person in many ways. I grew to look at it as a way of giving back the love that I received from her. I found that I had strength to cope with the challenges because I also received counselling on how to travel the journey.

We placed her in a residence that had facilities to eventually deal with her issues as they progressed and the care that was needed changed. I remember visiting her one day after a crisis in the stage they called the twilight zone. It was the richest moment that I ever had with my mother. She said to me "I just don't know what to do". She meant that literally. She knew that she was losing it but did not know how or what to do from minute to minute. I had just come out of a meeting with a team and they helped me prepare for that short visit. When I think of it today, it was a most amazing time that I ever had with my mother. I tried to be there for her during those stressful days and months until she entered a new stage but it was that afternoon that she was able to express herself for one of the last times. She knew what was going on but could not control it. No explanation was needed at that time as it was also beyond her ability. We could only try to help her cope and love her.

She eventually was placed in locked quarters so that she would not wander. She didn't know how to dress herself and the environment needs to be simple and lack clutter as their mind becomes agitated from excess stimulation (visual and auditory in particular..nothing on the walls and a neutral coloured wall is needed). Emotions come to the surface and she would cry when seeing me. They explained that it was the emotions being mixed up and the crying was an expression of emotion of happiness not sadness. There will be walls that hit you that may overwhelm you and the support system that exists in these institutions can be a god sent. I remember one piece of advice that I got from a pastorial care counsellor about whether you continue to visit or not when they do not know who you are. I was told as long as you are honest with yourself then you will not feel guilt for not visiting anymore after they die. If you make excuses for why you can not visit, you will suffer greatly at their death. Fortunately, my mother died of another complication( broken hip) before I had to face that question. She didn't want to live and we knew it. We had gone through a process for a living will scenario but in the end it was slightly different than the examples given.

May you find the strength for the journey that you are on with your mother. It is both painful and amazingly rewarding at the same time.

[listeningeyes]

I'm sorry to hear you and your mum are suffering through this disease. My first advise would be to take her to the Doctor and voice your concerns. There are many new medications out there for parkensons and dementia. These may make her quality of life better.
Another thing you can do is if she has any kind of hobby, encourage she continue it or encourage her to read, do puzzles any kind, and talk to her about the past and present to stimulate her brain.

I know you said she was happy now but that may not always be the case. Be prepared for her to become frustrated and angry.
There are many support groups out there for family members of people who suffer this, join one.

Most of all. TAKE CARE OF YOU.
I wish you all the best

[lizard-lix]

I'm sorry to hear you and your mum are suffering through this disease. My first advise would be to take her to the Doctor and voice your concerns. There are many new medications out there for parkensons and dementia. These may make her quality of life better.
Another thing you can do is if she has any kind of hobby, encourage she continue it or encourage her to read, do puzzles any kind, and talk to her about the past and present to stimulate her brain.

I know you said she was happy now but that may not always be the case. Be prepared for her to become frustrated and angry.
There are many support groups out there for family members of people who suffer this, join one.

Most of all. TAKE CARE OF YOU.
I wish you all the best

Both my mom and my mom-in-law had dementia at the end. My mom as part of her Parkinson's, my mom-in-law had several TIA's and just got senile.

Please listen to Listeningeyes. Do what you can. Then take care of her and take care of yourself...

My mom-in-law just got forgetful and lost, but a lot nicer.. Happy, goofy and started liking me for the first time (after being married to her daughter happily for 23 years).. She stayed that way till she died.. it was actually nice for all involved, she was the happiest I'd ever known her to be.

My mom went went fighting and clawing all the way, she got difficult, crazily obsessive compulsive, paranoid and kinda nasty. All while being completely off planet as far as reality orientation..

The common thing is that they both needed constant babysitting. We had to go with assisted living for both as none of us could make our houses safe or deal with the needs 24/7.

It will tear at your heart and you WILL feel guilty.. Try to not take anything personally and remember mum before this happened.. let go of any guilt..

Peace, good luck, hang in there...

Liz

[12voltman59]

I had a few relatives who died the long slow fade out with dementia---and it seemed to me that of all the ways to die---that has to be the hardest way--even when someone still has their wits about them but is fighting a cancer---they still continue to "be them" almost to the last, but with the diseases that take away the memory---it seems to you that the person you see this happening to---they fade away from you long before the body finally gives out.

I'd say that the best way to go---is for the person to drop dead before they hit the floor kind of thing.

But---if its the case that your mom is dying this way---that is what it is and you have to deal with it--as painful as it is to deal with.

I wish you, your family and your mom all the best in dealing with this situation.

[Realist]

It took my mother 5 years to die, after she lost her mind to Alzheimer's. 5 years before that, her joints began to deteriorate so badly that you could actually hear them grinding when she tried to walk. So, from abut 83, until she finally died at 93, she was first in constant pain, then totally our of her mind.

The poor thing was so pitiful and miserable, during those years. She needed total care and nothing relieved her pain. No one should ever have to live that way....she had no quality of life, whatsoever. During that time, I began to wonder if euthanasia might not be a better choice.

But, who could make that decision...I certainly could not.

[scorpio9]

Everyone here is so elequent with sympathy and understanding. I work as a CNA in a Dimentia/Alzhiemers ward (final stages). Find a support group, read as much as you can to understand the condition. I'm following a blog
http://creatingmemories.blogspot.com/ that is written by a man progressing through alzhiemers. Seems like everyone experiences it a little different. The main thing is to connect with support and be educated. I do wish you well in your journey.

[**Peg**]

above all else bizel, you must take care of you.

Here in Canada there are respite programs, where the patient goes to the day-care program one day a week to give the caregivers a break; hopefully you have the same thing in QLD.

best of luck to you.

Peg

[12voltman59]

Everyone here is so elequent with sympathy and understanding. I work as a CNA in a Dimentia/Alzhiemers ward (final stages). Find a support group, read as much as you can to understand the condition. I'm following a blog
http://creatingmemories.blogspot.com/ that is written by a man progressing through alzhiemers. Seems like everyone experiences it a little different. The main thing is to connect with support and be educated. I do wish you well in your journey.

Thanks, Scorpio. It is surely a very painful thing to see a loved one die like this---while with a few relatives who died from Alzheimer's and other related conditions were a bit removed from me---I was very much involved with my one grandpa. I served as one of his caregivers when he was still home and even when we had to put him into a nursing home because it was no longer at all possible to keep him in a home situation for a number of reasons---I was there with him in the center as much as possible.

Even though its been well over a decade now---its hard to believe its been so long now--the pain from it all doesn't go away--that is for sure.

My way of dealing with that all--is to not dwell too much on those dark days---but to think of early times when he and I did "happy things" like going fishing and things of that sort.

I do "hate" diseases of this sort---they are such a cruel way to go since I see such diseases "stealing" every last shred of humanity of our loved ones.

Before he became sick----one of his things as an older person was to tell the same old stories over and over again--and that can be both a source of humor and agitation when it comes to someone close---but with that illness---those stories stopped a few years before he finally died and I would have rather had him tell those stories up to the day he checked out with him passing in his sleep or having a fatal heart attack or something of that sort over the long slow, cruel fade out he suffered!!!

[Cherokee_Mountaincat]

This may sound odd or even cruel, but its not meant to be that'a way. As long as the person is not in intense pain, then just love them for who they are Now, and remember them for who they were then. I would much rather see someone "looped out of their goards" then to be in intense pain and suffering. Like another person said, their loved one was extremely happy and oblivious, and I think I would prefer to see that to watching them just linger in misery. My Mom had cancer and it ate her up so very quickly, and I know she was in more pain than she let on. If she has to go to a care facility, I'm sorry, but there she can recieve more care than what you and your loved ones can give her.
Peace be with her, Sweetrie. And with you and yours.
Big Hugs,
Cat

[djones]

Been there. Very difficult. Lost my Dad four years before he eventually died from the complications.

Best advice from my experience is make use of professional help as it is impossible to be a full time care giver and live a life of your own. Don't let guilt tell you otherwise.

It is a painful road that gets worse. There is only one destination on this road, but once there, there is peace. Though the road may be painful, with proper guidance, it can still be a scenic route - a trip with reflection, perhaps bringing people together. Look for the silver linings.

My best wishes for you,

D

[bizel]

one silver lining. it was my birthday couple days ago. my little cutie ma woke up, called out to me (usual routine when i get her up in the morning), and she burst out singing 'happy birthday' to me. tears-in-eyes moment.





Been there. Very difficult. Lost my Dad four years before he eventually died from the complications.

Best advice from my experience is make use of professional help as it is impossible to be a full time care giver and live a life of your own. Don't let guilt tell you otherwise.

It is a painful road that gets worse. There is only one destination on this road, but once there, there is peace. Though the road may be painful, with proper guidance, it can still be a scenic route - a trip with reflection, perhaps bringing people together. Look for the silver linings.

My best wishes for you,

D

[tenni]

Bizel
What a lovely thing to happen!!!! I'm sure that you will remember your mother's song as the journey moves along. Sometimes, the person can become a very happy and lovely person...more so than they may have been. I remember being told that some women with dementia have a great beginning to the day. Every day they open their closet they are so happy to see all the lovely new clothes to pick from!!!! Every new morning brings an entirely new wardrobe for them..or so they think. ;)

Cat
Sadly the person may suffer greatly as I tried to point out and this is especially terrifying for them in the "twilight phase" where some of them really understand what is happening to them and they are terrified every minute of every day. I believe during that phase my mother wanted to kill herself based on what she would say in a round about way. She just wanted it to stop. That time period varies from person to person. Emotional and psychological pain can be just as bad as physical pain. I think that some of them also may suffer physical pain but I'm not sure if they are able to communicate it as they lose language. You are correct though that eventually the terror stops for them...I think. It can take months.

When they think that they are children again, it does hurt the rest of us more than them. Once my mother had a nurse call me and put her on the phone. She asked me to come and get her because she had been a good girl at school that day. (She had just been put in locked quarters that day). It broke my heart as I didn't know what I was going to do the next day when I went to see her. It hit me around 2 am and I cried very deeply over what I was going to do. I called my sister and told her that she would have to go with me(no point me being the only one dealing with it..lol) The next day was not very good as I got to meet the other patients in locked quarters and see how my mom interacted. If I was not related to her, I would have thought that my mom was a crazy old lady..as were the others. Nothing can prepare you for seeing your parent in such a place. You do get use to it eventually though.

[Northerner]

My dad died last summer in his early 90s after suffering from Alzheimer's for many years. After warnings from doctors of the many things he might die of (pneumonia being a common one), he simply stopped breathing as he lay peacefully in bed at home one morning.

This is a disease that is generally harder on the caregivers than on the patient. My parents lived on their own for may years with my siblings and I visiting regularly (we all live out of town). We were lucky because he did not wander. In fact, he walked to a nearby coffee shop on his own for many years. However he did tend to turn the stove on and forget it. For a while we had to remove the fuses for the stove. As the disease progressed and my mother's physical abilities declined we had to arrange for a live-in care giver as he needed constant attention.

Much patience is needed. He often asked the same question over and over. I would simply answer it every time with a smile. It was much harder for mom as she had to endure this 24/7.

The worst times were when he was ill and hospitalized. Few nursing staff have training in handling dementia patients. They acted as if he was being deliberately difficult. We had to work especially hard to ensure that he knew (and was constantly reminded) where he was and why, as confusion made him fearful and difficult to deal with. A family member made a large sign for the wall at the foot of his hospital bed reminding him that he was in hospital, why he was there, and that we would be in to see him every day. This helped immensely.

I only realized how hard eight years of this was on my mom (she is in her mid 90s) after dad passed away. She had completely withdrawn and I suspect was quite depressed, though we could not get her doctor to deal with this. She has been improving constantly since then. She is much more engaged with the world, more active in conversations, and tonight I had my first phone call from her to say hi and chat in almost a decade.

Despite his failing memory I would say his quality of life was surprisingly good. He enjoyed company and conversation, though he did not always remember people. Near the end he did not always recognize me, but I never took it personally, it was simply an effect of his illness. I last saw him a couple of days before he passed away. He was bright eyed and smiling, and greeted me by name when I walked in. It is a memory I treasure.

[bizel]

went to the doctor this morning cos i just couldn't stop crying. she was shocked to see me in such a state as she said i always looked so in control. she said she kinda felt i understood mum had dementia, even though i never mentioned it before. when i go to the dr, mum is always with me (except today i left her safe at home with all these floods about) and i never wanted that word said in front of mum cos i didn't want her scared. if i didn't have the situation with hubby, i think i would've been fine and maybe could have coped. maybe that's one good thing to have come out of this 'hubby situation' cos the dr recommended the respite care. mum had always snorted at it, but recently she's been so bored. she just sits cutting out pictures all day long. there are literally stacks of paper all around her that i try to keep under control, but they get everywhere. when i mentioned respite for one day a week, she was thrilled to give it a try. i'm arranging it once the flooding is over and we can get about.





above all else bizel, you must take care of you.

Here in Canada there are respite programs, where the patient goes to the day-care program one day a week to give the caregivers a break; hopefully you have the same thing in QLD.

best of luck to you.

Peg

[alli_smiles]

Bizel - hugs to you and your mum- the respite idea is a good one, for both of you. I am a CNA and I take care of people for living...I had one private dementia case, and lots of agency cases and some nursing home cases. We kept my private case at home and between me and his daughter, we did ok. Don't be afraid of asking for help, or giving her meds if she has delusions or personality changes at some future date. Meanwhile, just know no matter what she says or does, she is in there, and she loves you. She may not be able to process information correctly or express herself...but she is in there. It is haunting, gratifying and exhausting being the primary caregiver, but it is worth it. Also, don't feel guilty if you feel resentful or angry at times. Its normal. Don;t feel bad if at the end you feel relief, not sadness at first....That too is normal. You have the chance every day she is here though to make her smile, and that makes it worth it.

[nudistharry]

My mom had Alzheimer's. She got so bad, we had to put her in a nursing home. She was there 5 years, the last 2 years she was basically a vegetable, she did not recognize anybody, could not talk (only grunted) could not feed herself, couldn't chew her food (they fed her pureed food) and was incontinent (both bowel and bladder).

I work as a nursing assistant in a dementia facility. Most of the residents I care for have Alzheimer's, but some have other forms of dementia.

Seeing what all these people go through (even with the most caring people taking care of them), I would much rather get run over by a train then to live like they do. Zero quality of life and unable to make any sound decisions, even about their basic needs & care.

Find support groups (there are thousands of them around the world, just search the internet) and buy books, visit web sites, etc. to learn as much as you can about the disease.

[Bluebiyou]

Remember:
1. Distraction is your friend.
2. Routines can be your friend.
3. Sundown is your enemy.
4. Temper your actions with love, but realize this situation requires different behavior and responsibility on your part.
1. In addressing the person with dementia of behavior or actions, first start with logic and reason. It may work.
If the person is agitated, it won't make any difference how logical or reasonable you're being. They're acting on what pieces of feelings and logic they can put together. You and I would do the same... like holding onto the only life raft of something that seems right when you're adrift in an ocean of confusion.
Distraction is your friend. Mrs. Bluebiyou caught an old man walking to Florida with his walker in his jammies (pajamas). He was dead set on going to Florida to see his son; clinging to that purpose with every last bit of life in him. Reasoning that walking sever hundred miles with his walker was not an option, he'd only argue and fight. Mrs. Blue (wise girl she is) exclaimed with surprise: "In your jammers?!? You can't see your son like this! We've got to get you cleaned up and in some nice clothes. You don't want your son to see you like this do you? Let's get you home and dressed up nice for your son!" She started asking him what kind of nice clothes he had to wear. The man gradually abandoned his twisted little life raft of purpose and Mrs. Blue took him home.
When someone with dementia finds a purpose to cling to, no matter how dangerous, silly, etc, they will cling to that until they are distracted, not reasoned, out of that purpose.

2. Routine can be your friend. If the person enjoys something (and that something isn't dangerous), make it so. Years ago Mrs. Blue was helping take care of a lady. The lady enjoyed being neat and taking care of others through most of her life. When the lady was becoming agitated or getting into trouble, Mrs. Blue would go to her dresser drawer, pull out a pile of neatly folded clothes and strew them on the bed. She'd then kindly ask the lady to fold the clothes and put them away (telling her they'd just been washed). The lady would then busy herself, singing while she folded, putting away the clothes, quite content to have a purpose in this familiar routine. Other suggestions might be LEGO, puzzles, even crayons and paper. Use your imagination.

3. Sundown is your enemy (anticipate it). Folks with dementia often become agitated at sundown. In elderly homes, the ones most affected are referred to as "Sundowners".

4. It's like taking care of a regressing child. They're not going to get better. Being harsh with them only hurts their feelings - you are now responsible for outsmarting them. Sanatoriums, unlike hospitals, were more geared to help people die by offering what comfort was possible before the inevitable. As ugly and inappropriate as it is to state this here and now, it's a good principle to keep in mind. Patients with dementia are usually the most difficult to take care of.

Above all, remember these folks are adrift in confusion. This is often scary to anyone who finds themselves in this place. Thoughts and feelings drift apart and together like flotsam and jetsam. If some thoughts and feelings come together in the confusion, they'll cling to it in desperation of making some sense of the confusion, of having a purpose. From the day we are born, we try to make sense of our world and strive for understanding and purpose. That's usually all they're trying to do. We would (and perhaps someday will) do the same as our friends and family with dementia.

[bizel]

i've noticed her becoming more confused. she struggles to get words out, she wants to offer help and suggestions over my medical condition, but just can't seem to put it into words. both of us get frustrated. she used to be my rock, my anchor when life was choppy, full of advice and support. she always knew what to say, always could see exactly what was happening and what i needed to do. now, i spend all day cleaning up after her, trying to understand her.

she was reading a library book yesterday and started to underline passages as she read them. then realising it was a library book, she panicked and started gluing the affected pages together. i didn't realise what she was up to until it was too late. she loooves chopping magazines for photos and articles. i try to collect them from garage sales - cheaper. trouble is, everything looks good to her when the scissors are in her hands. i've taken to discreetly tucking them away so she has to ask. then i know what she's up to. you are right, you do have to approach each situation from different angles. it can't be approached head-on.

i am worried if i put her into respite care while i'm in hospital and recovering, is she going to revert even more into her own little world? it seems to be happening so fast. i worry what difference a few weeks will make.

[DuckiesDarling]

Bizel, it's up to you, but I'm of the firm belief that respite care for those with Alzheimer's/Dementia are a break for the family. A badly needed break. Do not fear that she might revert more if you do this, she may very well do so while in your home. The moments of lucidity will come again, fewer and fewer but they will be still be there and makes all the care worth it. Like I said, I watched my grandfather die four years before he really died. But not once did I look at him and wonder where my grandfather was, I always knew it was just him in that chair.

Hugs hon, it's a rough, rough thing. But as you said she was always your rock and she still is, you just need to realize the mooring rope is a bit different now.