It's Been a Long Year

[LEW]

Hi All,

I think it was almost a year ago when I first came to this forum because my Mother was diagnosed with AD. It has been many months since I last posted and all of those posts are gone now. I don't know if it's a bad sign or not, but I don't even remember what my user name and password used to be! LOL
(shrugs) That's okay, I just signed up again and am glad to be back. I recognized a few familiar names on the Members List, so maybe I'm still okay.

Mom, unfortunately, hasn't made a "come back." I still haven't figured out if there is any real rhyme or reason to the stages of AD or if there are any solid statistics as to the patient's rate of decline over time. Last year she had a mixture of symptoms from both the Mild AD and Moderate AD categories. Now I guess she is considered as having Moderate AD. Four months ago, during her quarterly check up, her doctor told us (Mom and me) that she probably still has a couple of good years left. Last month he seemed a bit more concerned during her visit and these are her most recent symptoms:

Mom has lost a little bit of weight
won't shower unless I get the water running and insist she get in there and take a shower NOW
is fully dependent on her diapers and doesn't seem to have much bladder or bowl control
cannot remember what day it is
has absolutely NO concept of time of day, daytime or night
will sit and do absolutely nothing at all for hours at a time, just staring into space.
will watch TV - IF I turn it on for her. She says she didn't think of it, but will sit & watch it all day long if it is on.
won't take walks around the block anymore, but will sit outside in the sun every day. Her tan is darker than mine, too :(
sleeps or "rests" most of the time
was having minor hallucinations and was easily agitated 6 months ago. (now under control with her meds, which tend to make her feel tired more often but help make her more manageable)
manners, personal hygiene, proper attire and cleaning up after herself are being ignored (or forgotten), more often not.


This once very proper woman will sometimes audibly fart at the dinner table & not say a word! :eek: If I say something like: "Excuse you" to her, all she says is "I can't help it!"
So much for my appetite!:rolleyes: LOL

I welcome feedback from those of you who have been through this with your own family members and from those who have lots of experience with AD patients. Based on the things I listed above, I would like to get a better "fix" on where we are at with this disease.

In case anyone is wondering...
I am an only child and the sole caregiver for my Mom, who will turn 80 years old later this month. We share a house with one other person, who I occassionally refer to as my boyfriend - depending on how well we happen to be getting along at the time. :D ;)
At the time of my earlier posts, I was working a full-time job outside the home as an Administrative Assistant at a cemetery and mortuary. Since then, I lost my job because of absenteeism although, I prefer to think of it as having been devine intervention. After all, things would only get worse before they would get better. Mom needs me here and she wouldn't be safe here all alone, all day long anymore. I got creative and went to work with my computer.

Now, I make more money (per hour) and work less hours, I don't deal with commuter stress or absurdly high gas prices, and I am here with Mom every day. I try to take care of myself and take little breaks away from here, whenever possible and safe to do so. Mom is fortunate enough to live in an area where she not only has been able to receive excellent supplimentary medicare insurance benefits, but is also receiving benefits which help with her basic day-to-day needs and supplies, including respite care services - so I can take a break and not have to worry because I know she is receiving the best of care while I am away. It's almost funny, but that was a benefit I wasn't really fully aware of until nearly a year after she became enrolled. Like... I could have taken time off a long time ago?? DUH!!

The main point I want to make for those who read this post & don't have their sense of direction as far as being a caregiver and/or what kinds of benefits or services might be available to them or their AD afflicted loved ones is: Do your research - not just on the disease - but on local services, too. There are AD support groups and information centers listed in every major city in the country. There are Senior Services organizations listed in the phone book. Social Services organizations are a good place to ask questions, too. While the benefits Mom has are very unique to the area in which we live, there are a few other places within the US which have similar programs.

Above all else, be kind to yourself. If someone offers you a break from your caregiver duties, (providing it is someone you know you can trust) by all means, TAKE THEM UP ON IT! I don't know how long this journey will last, nor do I know when it will end. It ain't pretty and it ain't much fun sometimes, but I lean on my Higher Power when things seem overwhelming. Perhaps that is the best advice I can offer to anyone.

LEW

[Tootsie]

Hi Lew,
You give very good advice and I hope that you will continue to participate in this forum. It can be very quiet for periods of time but when someone posts, sometimes it is in quiet desperation, when things have suddenly come crashing into reality.

The symptoms that you describe are typical of the progression of AD. It is never a neat and tidy process that follows a particular pattern. The "stages" are not complete, as someone can have symptoms from several different stages and you go by the ones most prevalent. No doubt you have learned that there is a type of role reversal here, where you are no longer the obedient child. Your status is now caregiver and your mother is now your child to care for and to organize the household and rules for her care.

You are very fortunate to have access to wonderful supportive services. It does help. When I was caring for my mother 20 years ago, no one at Senior Centers wanted to talk to me about what I needed. It was necessary to put her into a residential care home, as Day Care, while I was working, was not available.

With the auxillary services you have available, you may never have to resort to nursing home care unless her medical needs require that. That, too, is a very individual decision and varies for everyone. It may be your need or your mother's need but it doesn't really matter as we all do what is needed when it is needed. No one can expect more. Cheerio.

[joy]

I am no longer a caregiver for my mother but you just described my situation about how my mother's day was very well. My life has not changed all that much since she is gone, sad, the only thing is I am alone even if she did not talk that much to me. Don't have the responsibility but alone. You gave such good advice about letting friends, etc. help and about taking any help she is qualified for. Please keep posting. I did find that this forum was very slow at times when I was a caregiver. It helped to read how others managed things and pointed out things that I might have never thought to try. And also, the feeling that you were not alone helped tremendously. And just to be able to VENT and not have to feel guilty about it. I spilled it and let go of it more than once. Better here than to someone who did not understand how tired or afraid I was. There was more than once I thought that I couldn't keep it up, but I did and this forum helped.

[LEW]

Such kind compliments do make me feel welcome.

Joy, I remember you! In fact, I believe you might have even responded to one of my posts from last year. I am very sorry to hear your mother passed. You are not alone even though you are feeling lonely - you are among friends here and your Higher Power is ever present. (Regardless of your religious beliefs - I'm just being careful not to offend anyone.)
I think it is awesome that you still are here for those of us who are still going through this and I, for one, appreciate your willingness to share your insight & experience. For many, it is probably a done deal when they are no longer caregivers by choice or default and they would rather move on with their lives - not wanting to hang out here any more. Personally, I can imagine it as being part of your own, personal healing process. What better way than to share and help those who really do benefit from what you have to offer? Bless you for being here!

Tootsie - Thank you for your kind reply, too! I sort of thought the same as you wrote, in regard to the stages being inconsistant from one person to another. AD, in itself, is a very confusing disease!

You are absolutely correct about the role reversal, too. It is so totally weird. My Mom was never the main disciplinary parent, though. Maybe that is why it feels so strange to have to treat her like a child. Just when my own three sons have all grown and are on their own now, here I am (40-something) and dealing with diapers again! There is something about this that strikes me as being rather unfair but, then again, nobody ever said life was going to be fair.:(

To anyone and everyone-
I am very thankful for our local support services. It is all so strange, really. I mean... I moved here three years ago from another state, because of the guy in my life. Only one year later, Mom decided to run away from her home and an unhappy marriage situation on the East Coast. I arranged for her to stay with her cousin, but he became ill and was no longer around to look after her. So, I moved her out here, got her into a retirement & assisted living residence, got her on her medicare supplimentary insurance, etc.

I knew she had something going very wrong with her memory. But when I first went to go move her out here, it was the first time I had seen her in about 3 years, face-to-face, and it was really a shocker. She had lost sooooo much weight, looked so frail - like a good breeze would knock her over, and I saw signs of her having had a minor stroke. She said she had been sick for a couple of days, had trouble seeing & getting around. The biggest sign was that one side of her face was drooping very noticibly, and her speach was affected.

She had been taking Dilantin for about a year before she came here because she had some sort of black-out. Her doctor (back east) assumed it was a seizure without doing any sort of brain scan or testing, and wrote out the 'script! Her doctors out here didn't feel she was at risk for having seizures or that she should be on the Dilantin, but left that choice to us. (Liability concerns, no doubt.) Sooooo, I gradually eased her off of it, hoping to stop any further damage that Dilantin can cause in the brain of someone who doesn't need it. She has been off of it for well over a year without any problem or seizures at all.

Unfortunately, despite all of the research I've done, books I've read, and vitamin suppliments I have been giving her since she got here, it looks like there really isn't a whole lot that can be done. At best, I may have slowed the progression a little by eliminating the Dilantin, giving her B12, Folic Acid, lots of Omega-3 fatty acids (fish oil), dl-Alpha Tocopheryl Vitamin E, and a daily multiple vitamin besides. We also tried ALA and Co-Q-10 for a while, but with no remarkable improvement in Mom's memory and the cost of about 800 - 1,000 mg/day of Co-Q-10 being more than we could afford when I lost my job, we decided to give up on that treatment.

Mom has heart disease and has had bypass surgery & also has a pacemaker. Her thyroid was removed years ago, too. Oh, and she also suffers from Osteoporosis and has arthritis, especially in her back/spine.

Her prescription meds:
She's on an aspirin regimin (blood thinner), thyroxine (thyroid replacement - levels monitored closely, but is under control), Norvasc (for blood pressure control - works well for her), Metoprolol (beta-blocker), Lovastatin (to lower her cholesterol - successfully!) and Seroquel (anti-psychotic/anti-hallucinogenic - low dose works well).

Note: Seroquel is NOT recommended for treating AD and Dementia patients, nor was it approved for that purpose. It is usually prescribed for treatment of manic bi-polar disorder or schizophrenia.

The meds alone would cost us a fortune, even with medicare! If it weren't for things to have fallen into place the way they have, with my moving here to a place I never thought I would ever live - even in my wildest dreams - and being able to get the supplimentary insurance to help pay for mom's meds, supplies and doctor visits, etc., there's no way we could have afforded it all.

Now, before anyone asks about why Mom isn't taking any of the proven AD meds...
We tried her on one of them for a while, but it seemed to make her even more confused than she already was and we decided that one wasn't right for her. When we moved into the house we live in now, in a different part of the county, we found her a new (totally awesome) new doctor. He wanted to try her on Excelon, but at that time her prescription benefit allowance was maxed out. The price was more than we could possibly afford - even when I was working full-time. (We live in an area where housing prices are astronimical, rent is insanely high, and the cost of living is beyond belief - which makes things like this even more of a challenge or a hardship for the average family.) However, because there was a substantial increase in prescription benefit allowance that went into effect earlier this year, I'm hoping to be able to at least give Excelon a fair try. I've heard it works very well for some AD patients.

A former co-worker (whose father was diagnosed with AD over 8 years ago & is still alive & doing very well) loaned me her copy of a great book about this disease. In fact, it was autographed by one of the 2 docs who wrote the book - her father's physician! I wanted him to be Mom's doc, too, but he doesn't accept patients covered by the insurance she has.:(
I checked out his website & found out where his clinic is. I also discovered that one of his colleagues, who has an office in that very same building, does accept her insurance, so I decided to do the next best thing!:D
So now, if her doctor needs to consult another doctor about Mom's AD symptoms or treatment, he is right next door to a leading authority and research specialist of Alzheimer's! Besides that, he is such a wonderful and caring physician I wish I were his patient, too.

My point in bring this up is:
These things happen all the time, no matter how good your insurance may be or how crummy it may be - and unless you can afford to pay cash out of your own pocket for your physician of choice because they don't accept the coverage you have - don't let that stop you. They can still be a valuable resource even if indirectly, by finding a close collegue of theirs, instead. I could have easily overlooked this option, had I let myself be discouraged by not having "the right" type of insurance coverage that would allow Mom to see the best doctor or get the best treatment. I'm so glad I didn't give up!

More to come in a separate post, where I will reveal more about the book I mentioned, links for more information and other books. (I am not getting paid or compensated in any way to advertise it - I just happen to feel there is a lot of very valuable and useful information that others might want to know, too.)

I think I've said more than enough for now, but thank you all again for being patient with my rambling. No worries - my posts tend to get shorter after I unload with a few verbose ones from the start!

Good Day,
LEW