Caregiver Feelings

Katie Roo

My DH with VD (diagnosed 1 year ago) is doing pretty well, I think. He seems to be in Stage 4 dipping into 5. He is independent with showers, dressing, cooking basic foods. However, he is irritated by anything - a car pulls out too slowly, people may not respond to him as soon as he hits "send", I park in the wrong spot (but I'm getting out, not him). It's an all day journey of nothing is right. When he gets really upset his mantra is "you think you are always right. You never are wrong. You never apologize, or say you are wrong." I am emotionally shot, even though I know it's the disease. I no longer have self-confidence. I wonder about anything I say - will it be right, will he asked why I would say that. It's like walking on eggshells all the time, and trying to keep a positive attitude is difficult. Saw a statement the other day, something like "Life is soup, and I'm the fork." That's how I feel about this disease.

I was trying to find any information on caregivers losing self-confidence, but what I found most was about aggression, and something had to trigger it. Nothing about self-confidence, or self-esteem. Until this article. So, I wanted to share in case it was helpful to others. I do not post much on this forum (mostly because we are not as far in the journey as others seem to be), but I do read it a lot and get good information/suggestions. Thank you to all of you for that. Anyway, below is the link. It further enforced that I am not alone.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7437725/

storycrafter

Thank you, Katie Roo, for posting this article. I found it fascinating for multiple reasons. As you said, "It further enforced that I am not alone." I too appreciate how it validates my experience as a spousal caregiver. (I also was a significant caregiver for my very elderly father the last few years of his life, which gives another perspective in the mix.)

There is a dearth of information on this/these complex aspect/s of caregiving. the emotional impact on relationships of intimate caregiving, with both self, care receiver, and other/s. It's encouraging to see there are those interested enough to embark on such research. It leaves a wide and diverse field of potential areas for more encompassing research in the future.

When I first came to this site long ago, I wrote much more often, and also participated actively in the weekly online chatroom that was available then. It really was a big help and is a sadly missing option in the new site. It wasn't frequently used as much in more recent years, but it was a very worthwhile option as different people come and go ... After a few years I got past the shock and overwhelm of the early years with dementia in a marriage. I learned a great deal and continue to so appreciate this site.

I write much less now since the format has changed, but mostly because of what you gave reference to - not being as far along in the disease process as others. My husband's process is very slow and long (he continues highly functioning, though greatly compromised from his old self) and gives me much time to self educate, adjust/adapt/contemplate, and to develop coping strategies. Our situation is not nearly as dire and severely demanding in the ways intensified in later stages (though it has its own brand of intensity and isolation in different ways in the beginning and middle phases). There are those in much greater stress and need than I'm in now and my heart goes out to them and everyone here.

Thanks again for finding this article and taking time to post the link.

harshedbuzz

@Katie Roo

You said: "I do not post much on this forum (mostly because we are not as far in the journey as others seem to be), but I do read it a lot and get good information/suggestions."

Every stage and symptom of this disease is a challenge. For me personally, the early mid-stages were the most difficult. You may be in the worst of it.

It was a time when dad still had some awareness of his changes in cognition and was very reactive to the restrictions being implemented-- the loss of driving, moving near me where I'd be "helping" mom make decisions, no longer managing money, restrictions on his drinking, etc. His mood baseline in this era was irritation. The intersection of his poor judgment, lack of social filter, nastiness and arrogance was not a pretty place. For me, stage 4-5 was the 9th circle of hell. The stage 6 and 7 version of dad was a lot more pleasant to manage and be around. YMMV.

HB

Denise1847

Thank you for the informative article. I really needed to read it this morning. My DH is in stage 5 and he was diagnosed 5 years ago but showing symptoms at least 7 years ago. Somedays I can get through the day just fine. Other days, I feel like I am going insane from the isolation, fear etc. It was really helpful to read that my feelings and reactions are "normal", that I am not a terrible person and just validates how this disease affects the caregiver.

Belle

Katie Roo, Thank you for posting that study. It was very interesting, and sadly reassuring, to read others dealing with the same feelings about caring for someone with dementia. My DH is also around the same stage as yours...angry, irritated, yet unable to manage himself any longer. I feel like I am walking on eggshells constantly and having to 'retrain' my own brain to remember not to ask him to do anything around the house because it ends in disaster and that is always 100% my fault even if I had nothing to do with the project he's working on. I was close to asking his doctors to try another medication for his anger but he has mellowed a tiny bit lately or I've gotten better at dealing with this stage. Sounds to me like you need to be here too, just like me, none of this is easy on us or our LO.

ThisLife

Thank you for sharing this article. It is so validating for my experience. My H was starting stage 4 when diagnosed 10yrs ago. Being irritated was his state. The last three years have been an irritated, angry I'm never right, etc. leaving me unable to act or think in many situations. I walked on eggshells and was exhausted emotionally and physically. Having recently placed him I'm beginning to realize how much self-confidence I've lost. I think that is going to be a slow rebuild.

Howaboutnow

Thank you for sharing the link. So many of the quotes in the article have also come from my own mouth. Table 2: structural analysis was interesting…breaks down caregivers (our) words into what a therapist hears 😔

ImMaggieMae

Katie Roo, excellent article. Thank you for posting the link.