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He has bad memory loss, he is fairly delusional about things. Repetition of same stories constantly. Obsessive about religion. Toxic behaviour, making up stories/lying.
In the beginning, when I was learning everything I could about Alzheimer’s, I also wanted to know about the stages and was trying to identify what stage my mom was in as she was progressing. I guess knowing the diagnosis and being able to assign stages was helpful to me, perhaps in a way to understand what was coming next. But as others have said, stages are just numbers.
Everything you mentioned is exactly what I went through with my mom. That is classic dementia, especially in the beginning. The delusions, forgetfulness, repetition, obsessive/compulsive behavior, toxic behavior, especially towards you, and it feels so personal and hurtful. Eventually, I came to realize that she was probably feeling so frightened and confused, and perhaps I, being safe for her, was a safe outlet for her to vent on, even if she wasn’t doing it consciously. That didn’t make it any easier when it was happening, really only in retrospect later. I had to keep telling myself, it’s not her, it’s the disease… it’s the disease… it’s the disease. (while taking 1000 deap breaths!)
I am assuming that you have ruled out other medical conditions like a stroke, urinary tract infection, or other medical condition and that you do suspect Alzheimer’s or some other form of dementia. If so...
Your dad will exhibit signs of multiple stages, sometimes simultaneously, and sometimes he will go back-and-forth. Sometimes he may progress to another stage, and sometimes go back to another stage for a while, and so on.
It will be helpful to learn the signs of all the stages and then recognize the symptoms and learn to deal with all of them. It’s a very difficult journey and I feel for you. There will be very very hard days (hours, minutes), and there will be easier days, and there will be times that you might have weeks and even months at very difficult stages and then, at least with my mom, there might be times that he goes back to an “easier stage” for weeks or even months.
With my mom, none of the above seemed to be directly attributable to medication changes or anything we did in terms of her treatment or even the way I tried to manage it or her. It’s just the disease progression, and the mystery of the way it, and the brain, works. It just takes an extraordinary, sometimes seemingly unmanageable, amount of patience and understanding, and continually educating yourself.
This forum offers a wealth of support. A lot of times when I thought I must be the only person on the planet dealing with the things I was dealing with, it was very helpful to find not only some answers, but simply that other people were dealing with the same things.
Good luck, stay strong and take care of yourself! ❤️
Thankyou so very much. This is very good advice and I will try very hard to be patient etc I had a convo with one of my siblings last week and he admitted that he didn't realise how much worse my father's brain had deteriorated, as he doesn't really see our dad all that much more does my sister. I'm the only one along with my husband, who sees him regularly.
My name is Dr. Jack Grenan and I have a PhD in Hypnotherapy, MS in Psychology and a MA in Education. I have personally dealt with these types of issues with my grandmother who we lived with for more than 2 years untik her passing. I personally suggest that you have 2-3 Psychologists examine your father. I also suggest that you make sure to investigate the different medications that may bring relief to your fathers symptoms or side effects. I also know of new methods that are available to improve your fathers condition. I am not seeking new patients. I am a survivor of 4th stage colon cancer and a coma with a constant 106 degree fever for 4 months. So I had my own issues with memory as well as issues from 7 months of chemotherapy. You can reach my e mail address my placing my name in a general search. I help anyone in need who ask me for help. I am NOT trolling for patients I am blessed to have had my heart stop and be fortuante to have had my heart and life brought back so I could live with my family! God Be With You, Dr. Jack Grenan
Stages, as published, are only guidelines. Chances are that he is exhibiting symptoms in several stages.
Toxic? Lies? Making up stories? This, unfortunately, is part of dementia. The stories, you think he is making up, are very real to him. This is how his brain is working, or not working. His brain is broken and he is unable to remember what the truth is, he is delusional. Those with dementia also have intense paranoia so that will cause delusions.
You need to be able to be in his world. Don't argue or try to correct his thoughts. That will only cause agitation, which can become extreme.
I think it might be useful to know if his behavioral symptoms can be helped by meds. I would schedule an appoinment with his PCP and get a referral to a geriatric psychiatrist.
I think you also want to know what level of care he needs at this time. For that, I would contact the local Area Agency on Aging and ask for a needs assessment.
I'm sure you're trying to figure out where he's at in the dementia process and how long this stage will last. While no chart can be a sure-fire answer, this one, I think, has a good timeline for what to expect.
Good luck..........such a terrible thing dementia, I know, my mother has it as well.
I would also add that sometimes, by the time you get to this point, it might be very difficult to get your dad to admit to even needing to go and see a specialist for the full work-up and formal testing. That’s where we were with my mom. Why should I go to a doctor? There’s nothing wrong with me! Dementia? Of course I don’t have dementia! Medications? I don’t need medications! And so on. You can just imagine trying to get her into an MRI. That was a nonstarter, several times over two years. We tried valiantly for a long time, and eventually gave up and luckily found a visiting doctor who has prescribed medications (powdered, in her Ensure) based on the obvious diagnosis without needing the MRI and all of the formalities.
If we had a cure for it, rather than simply managing it, I would have forced the issue, kicking and screaming notwithstanding. Sadly, we don’t, yet. 🙏
In my case, my dad and I were too close to her to be the ones to be making the suggestion. We got to be the enemy in that regard. Perhaps your dad has a close trusted friend that could be the one to have the conversation.
It depends on WHO you need to advise and the reasons WHY.
In my opinion the 1-7 stage model is good to research for yourself but not very helpful to describe to others.
The early/moderate/late stages are enough for dealing with medical people/hospitals.
A vague early or moderate is usually enough to inform others eg: a dentist appointment or a lunch with distant relatives. Just a 'heads-up' to what to expect really.
But for CARE the best I have seen is Teepa Snow's approach. She calls it *Positive approach to care*.
She really understands that people can move through different levels/stages due to all sort of things (pain, fear, stress, even time of day).
Eg: a *Diamond* (still clear thinking, sharp but cutting words) can become an *Amber* (stuck in an endless loop of thought) under stress.
You have some excellent suggestions here. With my experience with my wife, now 10 years into Alzheimer's, I too was concerned earlier about "stages" but these can change even in a single day. Consider instead what (if any) medications are needed, how to avoid urinary tract infections and bedsores and how best to care for your father. I find it still works well at home, even though my wife has been confined to bed for the last two years. It is important to get help, perhaps from a franchise like Home Instead, whose local workers have been very helpful. Don't try to do everything yourself.
There are so many books about dementia that's it hard to know which ones to recommend. I would suggest Jude Welton's "Can I tell you about dementia: A guide for family, friends and carers" and Lucy Whitman's "People with Dementia Speak Out" and her earlier book, "Telling Tales about Dementia: Experiences of Caring" (all three books published by Jessica Kingsley). The reason I am suggesting these is to stress how different everyone is in how they experience dementia, how they treat their loved ones and carers, and how those loved ones and carers themselves respond to different people with dementia.
You might also find helpful Dr Jennifer Bute, "Dementia from the Inside" (published by SPCK) which suggests: "There are three key principles when it comes to understanding people with dementia. 1) There is always a reason why a person is behaving in a particular way [although I would add, they may not know that reason]; 2) When facts are forgotten, feelings remain; and 3) Familiar patterns of behaviour continue" (p. 64).
I hope you find these suggestions helpful. I am very impressed at how you are responding to each answer. I too have found this forum quite helpful.
With friendship and prayers for a manageable future
Thankyou. Sorry I.havent been.looking at this forum. for a few weeks, so Ive only just read your advice.which is extremely caring and helpful. I.will. indeed look.into.your suggestions. Every little bit helps.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
Everything you mentioned is exactly what I went through with my mom. That is classic dementia, especially in the beginning. The delusions, forgetfulness, repetition, obsessive/compulsive behavior, toxic behavior, especially towards you, and it feels so personal and hurtful. Eventually, I came to realize that she was probably feeling so frightened and confused, and perhaps I, being safe for her, was a safe outlet for her to vent on, even if she wasn’t doing it consciously. That didn’t make it any easier when it was happening, really only in retrospect later. I had to keep telling myself, it’s not her, it’s the disease… it’s the disease… it’s the disease. (while taking 1000 deap breaths!)
I am assuming that you have ruled out other medical conditions like a stroke, urinary tract infection, or other medical condition and that you do suspect Alzheimer’s or some other form of dementia. If so...
Your dad will exhibit signs of multiple stages, sometimes simultaneously, and sometimes he will go back-and-forth. Sometimes he may progress to another stage, and sometimes go back to another stage for a while, and so on.
It will be helpful to learn the signs of all the stages and then recognize the symptoms and learn to deal with all of them. It’s a very difficult journey and I feel for you. There will be very very hard days (hours, minutes), and there will be easier days, and there will be times that you might have weeks and even months at very difficult stages and then, at least with my mom, there might be times that he goes back to an “easier stage” for weeks or even months.
With my mom, none of the above seemed to be directly attributable to medication changes or anything we did in terms of her treatment or even the way I tried to manage it or her. It’s just the disease progression, and the mystery of the way it, and the brain, works. It just takes an extraordinary, sometimes seemingly unmanageable, amount of patience and understanding, and continually educating yourself.
This forum offers a wealth of support. A lot of times when I thought I must be the only person on the planet dealing with the things I was dealing with, it was very helpful to find not only some answers, but simply that other people were dealing with the same things.
Good luck, stay strong and take care of yourself! ❤️
I also know of new methods that are available to improve your fathers condition. I am not seeking new patients. I am a survivor of 4th stage colon cancer and a coma with a constant 106 degree fever for 4 months. So I had my own issues with memory as well as issues from 7 months of chemotherapy.
You can reach my e mail address my placing my name in a general search. I help anyone in need who ask me for help. I am NOT trolling for patients I am blessed to have had my heart stop and be fortuante to have had my heart and life brought back so I could live with my family!
God Be With You,
Dr. Jack Grenan
Toxic? Lies? Making up stories? This, unfortunately, is part of dementia. The stories, you think he is making up, are very real to him. This is how his brain is working, or not working. His brain is broken and he is unable to remember what the truth is, he is delusional. Those with dementia also have intense paranoia so that will cause delusions.
You need to be able to be in his world. Don't argue or try to correct his thoughts. That will only cause agitation, which can become extreme.
I think it might be useful to know if his behavioral symptoms can be helped by meds. I would schedule an appoinment with his PCP and get a referral to a geriatric psychiatrist.
I think you also want to know what level of care he needs at this time. For that, I would contact the local Area Agency on Aging and ask for a needs assessment.
"Just like gems, each person is precious, valuable, and unique, and given the right setting and care, can shine." - Teepa Snow
Thank you so much.
https://www.dementiacarecentral.com/aboutdementia/facts/stages/
I'm sure you're trying to figure out where he's at in the dementia process and how long this stage will last. While no chart can be a sure-fire answer, this one, I think, has a good timeline for what to expect.
Good luck..........such a terrible thing dementia, I know, my mother has it as well.
If we had a cure for it, rather than simply managing it, I would have forced the issue, kicking and screaming notwithstanding. Sadly, we don’t, yet. 🙏
In my case, my dad and I were too close to her to be the ones to be making the suggestion. We got to be the enemy in that regard. Perhaps your dad has a close trusted friend that could be the one to have the conversation.
In my opinion the 1-7 stage model is good to research for yourself but not very helpful to describe to others.
The early/moderate/late stages are enough for dealing with medical people/hospitals.
A vague early or moderate is usually enough to inform others eg: a dentist appointment or a lunch with distant relatives. Just a 'heads-up' to what to expect really.
But for CARE the best I have seen is Teepa Snow's approach. She calls it *Positive approach to care*.
She really understands that people can move through different levels/stages due to all sort of things (pain, fear, stress, even time of day).
Eg: a *Diamond* (still clear thinking, sharp but cutting words) can become an *Amber* (stuck in an endless loop of thought) under stress.
I'll try to paste a link to follow.
Here they are.
There are so many books about dementia that's it hard to know which ones to recommend. I would suggest Jude Welton's "Can I tell you about dementia: A guide for family, friends and carers" and Lucy Whitman's "People with Dementia Speak Out" and her earlier book, "Telling Tales about Dementia: Experiences of Caring" (all three books published by Jessica Kingsley). The reason I am suggesting these is to stress how different everyone is in how they experience dementia, how they treat their loved ones and carers, and how those loved ones and carers themselves respond to different people with dementia.
You might also find helpful Dr Jennifer Bute, "Dementia from the Inside" (published by SPCK) which suggests: "There are three key principles when it comes to understanding people with dementia. 1) There is always a reason why a person is behaving in a particular way [although I would add, they may not know that reason]; 2) When facts are forgotten, feelings remain; and 3) Familiar patterns of behaviour continue" (p. 64).
I hope you find these suggestions helpful. I am very impressed at how you are responding to each answer. I too have found this forum quite helpful.
With friendship and prayers for a manageable future
https://www.alzheimers.net/stages-of-alzheimers-disease/
But what you describe is typical of a moderate stage of dementia.