My first post

toolbeltexpert

I am new here, I am unsure about where my DW is stage wise. She has not been evaluated by any medical folks. About 10 years ago I did some training with the local altzhiemers chapter as  a pastor, I got lots of books and at that time I had some questions about my Dw. Please let me say this now, I do not consider myself a doctor and haven't prevented her from seeing a doctor, believe me I have tried with no success. 10 years ago I got her hearing aides thinking she couldn't  remember if she didn't hear me, she has moderate hearing loss. That didn't  help. To make a long story short, she now cannot remember  if she fed the cats 2 minutes ago, we eat out everyday cause cooking skills are getting poor. She lately  has had a bad taste in her mouth, she says her tongue has a bad taste to it. And she doesn't want  to eat to much any more. She's lost 10lbs in the last week, partly cause I was sick and couldn't  go out.  She not wanting to shower, she gets agitated and hits things.  I  have no family in state and her only sister is 1000 miles away and hasn't visited in 10 yes or more. I keep thinking She's middle stage. But I saw that the taste thing is an early symptom. There have been a couple of stressful episodes, she wakes me up and tells me she's gonna leave and doesn't know where she gonna go. I don't sleep much when that happens. I swapped her keys with blanks. I am wondering am I just getting started with things with 10 or 20 yes to go.sorry I am rambling. Am I alone with confusion about stages

Quilting brings calm

No, you are not alone. Stages are our way of understanding where we are in the process.  Here’s the one I like to use.  Lots of information on this site 

 https://www.dementiacarecentral.com/aboutdementia/facts/stages/amp/

Buy the book the 36 hour  day,  it’s a good reference book 

Don’t worry if you got here early, on time or late in the process, we are all here doing the best we can.  How old is your wife and how healthy is she otherwise? 

toolbeltexpert

Thanks for your reply. She is 67, and she is very healthy for her age. She has a cataract  in one eye.

Ed1937

First of all welcome to the forum. You will get help and understanding here. We have a great bunch of people here. I'm sorry you are dealing with this now, but here is a link to stages. Hope it helps. https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/  Here is another link that is excellent, explaining dementia. http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf  

toolbeltexpert

I didn't  mention that as a pastor I visited 3 nursing every week and focused my time singing with the residents in the memory units. I did this for 7 years and found that many had little trouble singing the old  hymns. I learned a lot from the professional caregivers. I have watched many of Teepa Snows videos. I am still learning a lot of the pac skills. I just don't think a lot of the symptoms  fall in a certain order neatly like I want.   I am thankful for all the input I can get. In the last year I have had several days I didn't  think I could do this. I ask  for God's guidance and help, I have  prayed that I would live long enough to see my wife thru this journey. I have wondered if this time I spent at the nursing homes was God preparing me for the journey.

M1

Welcome. There are so many treatable conditions that can mimic dementia, she deserves evaluation for potentially treatable causes. For example, when you mention change in taste, that could be anything from Covid to vitamin B12 deficiency. Find an excuse to get her evaluated-a common on is that it’s a new Medicare requirement.

Peter Pan

It’s really hard but your gen. Family dr. Can recommend a memory screening. Likely when your doc dies the short test s/he will order a neurologist gerontologist if available.

We caregivers need back up info so we can learn how to live with our loved ones and not crash.

Stats are not good. 65% of caregivers die before their spouses of parents! We need to keep attention on our own care. We can still have a life and support our beloveds! 

We are all in this together. Denial helps, then we study, we get more resigned and teach ourselves. We have support. Let’s keep asking for help.

Peace. Wendy from Lacey WA

arizonadianne

A warm welcome and you’ve come to the right place. 

In addition to eating meals out, how about about exploring frozen meals and ready-made snacks? Perhaps buy 1 each of several different items to see what’s a hit and what’s a miss. Then buy more of what you each like. Keep some fresh fruit on hand and offer it each day. Nuts too, if she can safely chew them.

Jo C.

Hello and a very warm welcome to you; we are so glad you have found this very supportive place.  I am sorry for what is happening; I can see how hard you have been working to keep everything together.

If you can build a care team that would be best.  Getting her to a physician would be key to all else.  Now this is not what a Pastor wants to hear; BUT . . . . out of kindness to our Loved One (LO),  it sometimes becomes necessary to use a "therapeutic fib" to get our LO to care needs or to gain compliance with care needs.   It was very difficult the first fiblet I used; but to my astonishment, it worked well and kept my LO from agitation, irritability and refusal of a care need.   I found such fiblets when necessary to be a kindness to my LO; definitely NOT  a moral lapse.

Sometimes to get our LO to a doctor we may even say the appt. is for ourselves and then clue the doctor in.  Doctor can say, "Well, while you are here, let's get a look at you too, Mrs. So and So.  Be sure he orders a full cafeteria supply of labs to rule out any other condition; there are many that can mimic dementia.  It is always good to have a LO with issues to be checked for a "silent" urinary tract infection. These UTIs are called "silent," because there are no overt symptoms of such an infection, but there will be changes in behaviors to the negative side of the ledger. From experience, I know we often cannot speak about our LOs symptoms and changes in front of them in appt.; so what I did was to write a succinct but detailed memo to the doctor and got it to him/her three working days prior to the appt.; I let staff know it was coming and that it was time sensitive to the appt. This way, the physician can make a good assessment because there is adequate information.

It would be helpful for you to begin to format a support team. One; her primary care doctor; two; and very necessary, a dementia specialist such as a good Neurologist who sees dementia patients as a routine part of his/her practice.  Perhaps kind people from your church who could look in and assist or even bring a meal now and then.  Also; if it is in the budget, one can find a nice person to become a companion for a few hours a week or so, but who is actually someone to engage your wife and keep her socialized and get her settled; or perhaps someone who can do a bit of cleaning and meal prep even if only a couple of days a week for a few hours each day. 

If there are any Adult Daycare Centers near you that are open, that too is an option.   Each Daycare is different for type of program and how many hours a day they are open.  You would need to do a little screening.  Some of these centers accept Medicaid as a payor and also some have sliding scale fees.  Your wife would get some activities and also increased socialization and give you some rest.

There are indeed some wonderful frozen entrees one can find in the freezer aisle of the store.  Stouffer's has a lot of them, and of course there are many more  A frozen entree, a frozen vegetable and fruit and perhaps a sweet.  That suffices for dinner. Breakfast, oatmeal with fruit on it or even peanut butter on it; toast, banana, eggs done any which way - if scrambled - with cheese on top, along with toast.  Yogurt; flavored if you wish such as Chobani Yogurt with a bit of bran flakes and some blueberries folded in; so much now available.

Getting your wife to a dementia specialist is so important.  There are many different types of dementia of which Alzheimer's is only one.  It is important to have a specialist determine which type of dementia is actually present as meds for one type can be contraindicated in another and make things even worse.

Sorry this is so long.  My LO refused to see her physician and she really, really needed to be seen.  What I finally did was to elicit the office staff to assist.  My LO was dedicated to her blood pressure meds.  It was greatly on her radar screen.   So; the doctor's office called and said that they had been reviewing charts and noticed that Mrs. So and So had not been to see the doctor in a very long time.  Doctor was very sorry, but until Mrs. So and So is seen, he cannot renew the blood pressure medication. During the conversation, the office staff mentioned how much they missed my LO and how much they always enjoyed seeing her; AND . . . .oh; by the way, we just happen to have appts. open on such and such days.   My LO took the appt. on the spot and went in meek as a lamb.  Yes that was over the top, but she had multiple health issues surfacing and they did need attention. Whew!   As it was, the doctor would probably not have renewed the BP med prescription as it had indeed been quite awhile since she had last been seen.

Lots of rambling, lots of input; you will find your way step by step.  And; if you can have someone come in to assist, it would greatly relieve your burden and perhaps help your wife to have a bit more socialization with that person.

We are all here in support of one another and that now includes you too!   Please do continue to let us know how you  are and how things are going; we will be thinking of you.

J.

Jo C.

As to that noxious taste in her mouth that your wife complains about; there are medications that can cause that outcome.  Some even make the mouth taste metallic.   When that dynamic exists, all food will taste terrible.

You can use Google and look up each med and find out it it can cause an odd or bad taste in the mouth.  Be sure to use wording about causing bad taste.  Something may pop up that can be discussed with the prescribing physician.

J.

LizG55

M1 good point I was going to write something along those lines. the bad taste in her mouth for one but a lot of symptoms that need to be checked out before complete diagnosis.

LizG55

Jo thank you also for your super reply on the topic.  I'm too tired now to post to the author but  think all was covered and right you are about the bad taste in the mouth.. could be a lot of reason but surely must be checked out.

ToolBeltExpert.. I am too tired to reply much here but you got great advise. I hope the cats are safe though too and being cared for  

toolbeltexpert

Thanks to everyone for all the input, I just want to add some answers for all the responses. The bad taste persist, my DW isn't  taking any meds period. She does take 500mg of c and  500mg of b complex and has for years. A few years back she had to go to a clinic and while I was there I asked for her blood to be checked I mentioned the memory issue. When the results  came back her Vitamin d was just a little and I mean little low, other than that everything looked good. She has a very low heart rate and slightly elevated BP not diagnosed however. I have read some posts where folks had really  bad times in the evaluation process so much so that it lead me to not force her to get evaluated. Last year she had an eye exam and she has cataract in one eye which is really impeding her sight. She doesn't  want  to go thru a surgery and the eye doctor did warn me about the sedation possibility making her have a decline, so I haven't  pushed for her to have the surgery. Thanks for all the advice and not being judgemental. I have a DPOA and have tried to keep her as active as I can. It is a hard process to go thru. We are all doing the best we can

Stuck in the middle

Pastor, I would love to be able to tell you how fast this disease will progress and what to expect, but I cannot.  When you know one person with dementia, you know one person with dementia.  You should prepare yourself for a marathon of several years, plan for the worst, and hope for the best.

toolbeltexpert

Stuck in the middle I couldn't agree more. When I was visiting the memory  care units, I was surprised by the varying life span. My confusion for me was when I looked up the bad taste problem  my DW WAS experiencing and it seemed to suggest that was a very early symptom. Well I know that's not always the case now. I have to go with what's happening on the ground. My DW is probably in her 10th year of her journey.  Her short term is minutes. I get the same questions every few minutes. Did I feed the cats did i feed the birds? She is aware of her brain damage  she's  doing the best she can.