spouse caregiver support group - early stage

Jackson47

I am interested in forming/finding a support group of spousal caretakers ideally people who are encountering great resistance to any acceptance of what is happening both due to psychological denial and I assume panic at what it means. My wife still works, but in every other area of life which includes recording keeping for work is very compromised. Once she is unable to work, her mainstay defense is gone. We are nearing that point.  I am an open person, have been in groups before as I am a psychologist so I really hope to find some people. I am pretty new to this so I thought I would try this method.

Iris L.

Jackson47 wrote:

I am interested in forming/finding a support group of spousal caretakers ideally people who are encountering great resistance to any acceptance of what is happening both due to psychological denial and I assume panic at what it means. 

What you call great resistance to any acceptance of what is happening is not due to denial but to anosognosia.  Of course, this is if she has a diagnosis of one of the dementias.  Anosognosia is a characteristic of the dementias that causes the PWD to be unaware of having dementia.  You will have to learn work-arounds from the members.  There are articles about anosognosia, but I cannot make a link.  

Support groups are great but your best help will come from the members here.  Read a lot of threads and visit the Spouse/Partner board.

 

My wife still works, but in every other area of life which includes recording keeping for work is very compromised. Once she is unable to work, her mainstay defense is gone. We are nearing that point.  I am an open person, have been in groups before as I am a psychologist so I really hope to find some people. I am pretty new to this so I thought I would try this method.

She is at risk of getting fired.  Discretely take a look at her last employee performance review, searching for warnings.  If they know she has a dementia diagnosis she could be fired, it's too risky.  She can take short term medical leave of absence (sick leave) until the diagnostic testing has been completed.  Then, she can apply for Social Security Disability Insurance and take a permanent medical disability retirement.  There is more discussion on the spouse/partner board.

Iris L.

harshedbuzz

Jackson-

Hi and welcome.

It is very likely your wife has some degree of anosognosia and is unable to perceive that she has, in fact, had a cognitive shift that is progressively increasing her ability to do her IADLs.


Iris L.'s suggestion to get a lawyer who specializes in employment/disability law on board is an excellent one. On the spousal board there is a member "Crushed" who often talks members through the steps they need to take to protect their LO in this situation. You might be able to use the search function to find some archived posts from him. 

IME, there do exist IRL support groups. My mom and I attended one sponsored by ALZ Assn that was well-moderated and very useful. Most of the monthly meetings are open to anyone- spouses, adult children, friends- and any of the dementias at any stage. There are a few specialty groups that focus only on FTD as the symptoms and behaviors can be very different to ALZ or VD in the earlier stages.

I have heard of men-only support groups but there aren't any near me. There were 2 gentlemen who cared for their wives in mom's support group who formed their own little splinter group and would sometimes meet for lunch before the general meeting or on days when both their wives were in a day program/MCF. It was seemed very helpful for them. I had a dear mom-friend from my son's days in scouting whose mom had dementia- she and I would have lunch and trade stories about once a month. That kind of support is invaluable.

HB

Mick77

I'll just say that this is my first post, and that I need to do some reading around on the forum to see what's here.  But my situation is that I think my 61 year-old wife may be in very early stages—and she's a bit worried about it too.  She continues to work without apparent difficulty but I actually take care of quite a bit of her online demands since she gets a bit confused and frustrated even though she's been doing it for quite a few years.  I also do all of our financial dealings. She asks the same question several times in the space of an hour or two about simple things like what time are we supposed to be someplace or where she might have left something (keys, wallet, etc.).

We don't know exactly what to do.  We're a bit reluctant to talk about this with anyone, though she has mentioned it just a bit to her doctor.  She's anxious about quite a bit, and he's prescribed medication that might help her with that.  He thinks maybe she just suffers some memory loss due to lack of sleep and worry.  As someone has already mentioned, the job situation is somewhat dicey—she's currently in no danger of getting fired and deals with face-to-face situations just fine.  But getting an actual diagnosis might be too shocking for us, and I suppose might put her work situation in some jeopardy.  

I'm kind of rambling here but also just want to say that the original post caught my attention and sounds like a pretty good idea for a thread.

Thanks for reading.

loveskitties

You say she has mentioned a little about this to her doctor.  He can only advise on what he is told, so he may not have all the information he needs to do additional checking on her health.

You may be supplying enough help to mask the overall status of her abilities...it is not uncommon.

Keep a record of the things that seem "off" and then pass it on to her doctor.  He may want to do labs and testing to rule out other causes than dementia.

If it is dementia, it is better to know sooner than later so that you can prepare for the decline.  

Wishing you and your wife best outcome.

Jackson47

Iris thank you. I did not know anyone had even replied. Am having especially bad day so am trying to read up - I need to figure out how this works. Thanks in particular to resistance ?

Jo C.

Hello Jackson and Mick and a very warm welcome to both of you.   This is a wonderfully supportive place to find oneself.   Iris gives good advice regarding employment and how to legally plan and best protect oneself.

I would like to invite both of you to use the "Message Boards" prompt at the top of the screen and click on the "Spousal or Partner Caregiver Forum," to get you to that particular Forum.  You will find much experiential wisdom and responses there from other spouses for the issues you are addressing.

Mick; I so hope that your wife has had or will have a complete in-depth health screening as there are SO many different conditions that can mimic dementia and can actually respond to treatment.   The following are just some of them:

Thyroid Disorder

Depression

Vitamin deficiency:  Vit D; B12, B1, B6, (niacin, folic acid), etc.

Infections incuding UTIs

Medications including:  antihistamines, BP meds, cardiac meds, sedatives, asthma meds, corticosteroids, pain pills, some antibiotics, anti-depressants, anti-anxiety meds, and others including OTC meds and Herbals, (which includes THC and CBD)

Diabetes

Metabolic Disorders

Autoimmune Disorders

Hypercalcemia

Electrolyte Disorders

Malabsorption Syndrome

Sleep Apnea

Disorders of heart, lung, liver, kidney

Metal and environmental toxicity

Vision/Hearing Problems

Low O2 levels

ETOH use

Mental Health Disorders

Dehydration

Tumors

Normal Pressure Hydrocephalus

. . . . and more . . .

As you can see, a thorough medical exam with a full picture of lab and other results is necessary. 

If at any point, dementia is diagnosed, I suggest that getting to a dementia specialist asap would be the best approach. It is extremely important to have an accurate diagnosis for type of dementia as there are many different types of which Alzheimer's is only one. Our primary care MDs are wonderful at so much, but they are not on the cutting edge of this sort of dynamic.  This is crucial as treatment for one type of dementia can be contraindicated in another and make things even worse. A specialist is also best at prescribing appropriately which is very important, especially as the condition evolves.

Also, getting to a Certified Elder Law Attorney, (CELA), early on is important. This specialty is necessary as the field of elder law deals with dementia and there is much in the myriad of details.  Getting all paperwork in order while the Loved One (LO) can fully understand and have ability to sign documents is important.  A CELA can also assist with plans to position oneself best for the future.

You are both already good advocates for reaching out for information and for support; we are all here in support of one another and that now includes you too!

J.

Iris L.

Welcome back, Jackson, and welcome, Mick.  As I stated earlier, the best thing you can do now is read a LOT of threads, especially on the Spouse/Partner board.  Loads of answers and suggestions are there.  Every situation has already been addressed.

Jackson, one of our emeritus PWD members was Alan in Colorado, he himself was a psychologist.  We warned us that stress and anxiety reduce our cognition by HALF!  So we patients have to avoid stress or limit as much as we can.  Keep this in mind when communicating with your DW.  Aim to limit her stress.

Iris

[email protected]

My husband recently received a dementia diagnosis. I am terrified! What is the next right thing to do? I suppose getting things in order is a 1st step. Is there a recommendation for an Elder Law attorney in Vancouver, WA?

ButterflyWings

@mick and jacollins, please go to the top of the page and select "new discussion" to start your own thread. You will get many more direct responses to your specific questions. @ Jackson, look for the spouses forum.

-The members have said to pursue official dementia testing or find a knowledgeable specialist to rule it out

-Also, definitely consult a Certified Elder Law Atty, even if your spouse is younger. You need DPOAs asap.

-Here are some very important links they mentioned to get you started. Buckle up and keep posting.

Anosognosia and Dementia - AgingCare.com

National Elder Law Foundation (nelf.org) or this tab: National Elder Law Foundation (nelf.org) to find one

Understanding the Dementia Experience (smashwords.com) a most excellent article we all refer to:

Excerpt, p3: Introduction

Alzheimer Disease and other dementias slowly steal all memories and abilities that have been learned since infancy - a process of progressive, permanent amnesia. All dementias are characterized by progressive brain failure due to brain cell deterioration and brain cell death. There is no cure for dementia. As the brain deteriorates, the person’s ability, understanding and behaviour go through many changes. Often people with a dementia such as Alzheimer disease are seen as individuals with behaviour problems.

It is important to reframe how people with Alzheimer disease are viewed. Firstly, they are people with an altered view of reality due to the Alzheimer disease. Secondly, they are people whose behaviour can change, depending on how we interact with them. In order to know how to interact with a person with dementia, it is important to understand what they are experiencing as a result of having dementia.

Once we understand the dementia experience, and no longer view people with dementia as having behaviour problems, we see their behaviour as appropriate within the context of the dementia. This allows us to approach their care without fear. We can then deliver palliative care, care appropriate to someone with a fatal illness, with love and kindness. For those readers who have Alzheimer disease, or whose family members have Alzheimer disease, this is very difficult reading. Please remember that you have a lot of living left to do. You will need to find different ways to do things, but it is important to look for joy and hope every day. There is an enormous amount of research being done on dementia, with new research being published daily, and lots of reason to hope for new treatments being available.

There is joy to be found in one’s friends and family, in the beauty of nature, in the enjoyment of daily events, and in shared laughter. There is pride and contentment to be found in caring for a loved one, even though they have changed and become unable to do the things they did in the past. So please read to understand, and then turn your thoughts to the positive.