I NEED TO TALK TO SOMEONE

rauchy

Despite the relatively short time period dealing with my wife's problems and illness I am now realizing I have to give myself some care, a rest or just get some form of human contact that does not required an effort.

I have gone from being responsible for maintaining everything like the house, cars and landscaping to where I do all that plus handle all cooking, monitoring of medications, shopping for groceries, and playing hide and seek trying to find stuff put away in places nobody expects to find stuff. Every attempt to provide help, to get medical and professional help is met with resistance and I am watching my wife of 60 years in a race downhill. My stress level is almost to the moon.

It would be great to be able to spend a few hours engaged in any conversation about anything but dementia or Alzheimers. It would be nice if the distances prevent that to have a pen pal who is going through something similar and wants a break from reality. 

I live in Knoxville TN and my email for now is   [email protected]

That is not my real one but with so many nuts out there I will use it to receive legitimate emails and then switch to my real one

M1

Sorry you are having a hard time.  Is there not a local support group in Knoxville?  I know that's not completely ideal as a lot of the initial talk will focus on dementia, but it might lead somewhere.  These boards have helped me enormously during the year of quarantine.....

Jo C.

Hello rauchy; I read your Profile and can see what a challenge you are experiencing.  I would like to suggest that you also put your Post on the Spousal/Partner Forum; there are quite a few men there who also are caregivers of their wives, they are experiencing much of the dynamics you are and they are very active in support and sharing.   I am sure you will get good responses.

I hope that your wife has seen a dementia specialist by now.  If not, it is a good idea to get that done even if you have to use fiblets to get her there.  There are multiple different kinds of dementia of which Alzheimer's is only one.   A good Neurologist can accurately determine which dementia is present which is crucial.   Some meds to treat one type of dementia can be contraindicated in another and make things even worse.  I learned the hard way to never, ever mention to my LO the words, "dementia or Alzheimer's."  That turned all communication and getting to care right off.  Had to pretend we were going for something else.   

Our primary care MDs are awesome at so much, but they are not on the cutting edge of dementia dynamics and ongoing treatment.  It can make a difference; so a dementia specialist will give the best outcome, especially with treatment..  Also; it would be a very good idea to have your wife checked for a urinary tract infection.  Many of these are "silent" UTIs; that is, they have no physical symptoms, BUT there is often a significant change in behaviors to the very negative side of the ledger and sometimes even changes in cognition and function.  Be sure the doctor orders a culture and sensitivity of the sample and not just a dipstick test; dipssticks have a high error rate.  Be sure to have this checked, it happens quite often to our LOs.

There is a good reading to be found online that is truly excellent and worth reading. It is, "Understanding the Dementia Experience," by Jennifer Ghent-Fuller.  It can also be helpful for extended family to read.   Here is the link:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

It is good to do as much reading as possible regarding dementia, behaviors, how to communicate when things are sliding sideways, etc. Knowledge really is power.  So; it is best to read, read, read and then read some more.  This is one way to gain understanding and good techniques to make life a bit easier.  If you have a relative who can help, or if you can afford for someone to come in to help with cleaning, or to assist with your wife for even a few hours a week, that would give you some free time to get away and give yourself some breathing space.

Routine and structure in the home environment is key to keeping things calmer.  Arguing, or scolding, etc. really causes upheaval and is counterproductive and will make things worse.  Our Loved One's (LOs) ability to process, reason and use adequate judgment is by such a time highly compromised and such dynamics only causes us, the caregiver, to have a harder time of it.

You do need a way to get out and about, to give yourself a bit of respite without feeling guilty for having done so.  As mentioned, any family support or even a paid aide or paid companion to be with your wife will help you to catch your breath.

I also want to let you know that the Alzheimer's Assn. has a 24 Hour 365 days a year Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.   There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive and will listen to us as we vent and support us; they have much information and can often assist us with our problem solving.

Please do get to the Spousal Forum and copy your Post there; you will meet some very nice people of both genders who are dealing with spouses and facing the changes in their lives too; it is good to communicate with the other men to find out how they are surviving such difficult times.

In the meantime, I would suggest that you remove the link to your faux email address.  Even if you think someone is valid and you wish to give out your real email address, it is still easy to be grossly taken advantage of no matter how smart we may be.  It happens.

Please do keep in touch, you will be understood here; and no judgment, we pretty much all "get it." 

J.

John2.0.1

You sound like my dad just before he died. He never let on to us how hard he was working to take care of my mom with Parkinson's.

In hindsight we should have realized sooner. We got my daughter to spend some weekends at their house just to give my dad a break but it wasn't enough. He died of a heart attack and again in hindsight we think he was working too hard and was too stressed and still he never asked for help.

Do you have grandkids 17 years or older who can give you a break on the weekend? Friends who,can take over for a few hours? Funds to get some daytime help once to twice a week?

You need to have your self-care time or you'll just get sick or worse.

If you have any hobbies like photography or birdwatching or anything you enjoy you need to get someone else in there to give you the time. It's not an indulgence. It's not a weakness. It's not selfishness. It's not abandoning your wife. It's a true need just like eating and sleeping. You'll be no help to anyone if you die of stress and overwork.

Iris L.

The Chat Room used to be very active in the early years.  It was good for real time conversation, especially for those who could not get out of the house easily.  

Set a time in the evening, remembering all time zones, and invite other members.  

Iris L.

rauchy

Thank you all for your responses. Part of my intense frustration is her resistance to acknowledge her problems, and absolute refusal to pursue focused medical help. It is like watching someone continue to hurt themselves and having no means of stepping in. I know that destroys my patience because if she allowed me to insure she got the best of help I would feel we are working together to cope with this, but instead I have a hair trigger because I sense (incorrectly I am sure) that she is fighting me.

I will repost my leading post on this thread on the one for spouses.

rauchy

I failed to mention that I am not comfortable sharing information with a group. I am reluctant to get into private discussions one on one, but as soon as I can build trust (in both directions) I likely will not only open up, but let all my stuff bottled up spill out.

I really would prefer to stop talking, dealing with and thinking about dementia or Alzheimer's and talk about my garden, plans for travels, cooking, etc.

John2.0.1

rauchy wrote:

Thank you all for your responses. Part of my intense frustration is her resistance to acknowledge her problems, and absolute refusal to pursue focused medical help. It is like watching someone continue to hurt themselves and having no means of stepping in. I know that destroys my patience because if she allowed me to insure she got the best of help I would feel we are working together to cope with this, but instead I have a hair trigger because I sense (incorrectly I am sure) that she is fighting me.

I will repost my leading post on this thread on the one for spouses.

For what it's worth, the frustration you feel is normal. For people with dementia, rational thought and memory have flown the coup. When it comes to safety and self-care they become their own worst enemies. Picking an example from my mom, she's in a memory care unit and they are there and ready to help her. But she refuses help. My mom with her Parkinson's mobility and dementia issues refuses to ask for help going to the bathroom. She can hardly crawl. But she will crawl to the toilet, get up on it, fall to the floor when she's done and she has frequently hurt herself and sometimes I need to take her for an xray. She has her call button that she can hang around her neck but she rarely has it on and if she does she doesn't use it to ask for help. I have repeatedly told her it isn't safe for her to go to the bathroom like that. But she either will not ask for help or doesn't remember.

She has a custom made wheelchair with seat belts. She constantly imagines/hallucinates that there is something on the floor and tries to pick it up and falls out of the chair. She becomes extremely angry though when we ask her to use her seat belt.

 
Yesterday she somehow cut herself on her elbow and was all bloody. But she refused to let the aids and nurse help her to put on a bandaid.

The list just goes on and on and it's because rationality and memory are gone.

Arrowhead

I am also my wife's sole care giver. I have to do everything for her, too. Luckily, so far, she has not been too much of a burden. I like to spend time on Face Book. I have a long friends list, all people who I actually know. I would be glad to swap e-mails with you. I will send one to the address you provided. The tag line will be my screen name here. The address is not my main one, but I do checked it at least once a day.

Siniae

Let it spill