caregiver needs

Davegrant

After six plus years of caregiving, my DW public behavior changed to the point that I sought counseling to emotionally handle these changes. The counselor asked me what things I did just for me. I believe that he suspects that everything I do is related to my wife and the disease. He suggested that I contact my support system to see what others do just for themselves.

So, I am asking for your help.

Dave

M1

Dave, I wish I had obvious advice; I am in the same boat. I am so "married"--our personal life was so satisfying and so all-encompassing for so long that I struggle to define myself outside of it. I am an introvert to an extreme degree, so having one significant other and my children was all I needed. I do have things I have always liked to do that didn't involve my partner--reading, for example, and some craft work. I guess those count? But in my fantasy life, things that I would expand into really await her full death and departure., not our current limbo. Moving to a smaller place and perhaps a new community. Travel. Love to cook, but that really means cooking for others, not just myself, and I'm not in a position nor mood to seek out new friends/acquaintances yet. Several others have mentioned David Kirkpatrick's book "Neither Married Nor Single" and I think I am going to put it on my reading list here shortly.

mrahope

During the academic year I participate in two senior citizens' singing groups, each rehearsing for an hour and a half once a week. I find paying attention to the music takes me "out of my head" at least for that amount of time. I have also enjoyed a once weekly craft group, even though I don't get there every week. I'm a bit more of a social animal than some. YMMV

White Crane

Dave, that’s a good question. What do I do for myself? I have a caregiver that comes in 16 hours a month so that I can get out of the house a little bit. I attend church and Sunday school with or without my husband. Every other week, I have lunch with a group of friends. I teach Tai Chi classes twice a week at our local rec center. I go for short walks. I read. And when he’s taking a nap, I either read, take a nap, too, or call a friend. It’s not a long list but it helps keep me sane. I hope this helps.

Brenda

Ed1937

Dave, I guess through just about our whole married lives, most of what I did, I did for her. I dabbled into woodworking a little, and I made a few pieces of furniture that I still use. On some occasions, I did a little genealogy for both her side and mine. Then I became interested in old family photos, and I learned how to restore them, usually to a presentable condition via Photoshop. Most of the learning was done before dementia hit because it was time consuming, and I probably couldn't have done that during the last 2 or so years before she passed.

Here is a restoration of a pic of my dad in the driver's seat. He was a fireman in Whiting, IN. He passed in 1938, shortly after I was born.

She was a gardener, and since her death I've been learning a little about her plant friends and how to take care of them. I still have a very lot to learn. Not sure how any of this could help you.

M1

Love the picture Ed--and the attitude. The slouch is great.....

zigE

Hi Dave,

I'm in a similar situation. I think one of the best things you can do

for yourself is exercise. I recently have hired someone to help out for a few hours a week and

I started exercising. It makes an enormous difference.

Get help and exercise!

annewilder

HI, Dave and everyone,

I am 70, my DH with ALZ is 72. I am guessing he's been sick about 6 years but got dx in January.

I have a caregiver 5 hours 3 days a week. I get to take my dog on a good walk.....get groceries...go to bank, po, etc. This week I will put a deposit down at the local Memory Care place. Hopefully I won't need it but I need a good solid plan B. Last week I filed our first LTC claim so that process will start this week.

To your question, though, I am an introvert, a loner and very happy at home.....but I have one friend that I text with regularly.....througout the day.....she is very helpful. I have 2 close friends in town who check on me and I can meet them every now and then for lunch or coffee. I read, crochet/knit, do light yoga, cook some.....I am considering signing up with one of the companies that teach online languages, I've heard that learning a new language is very good for the brain.

My worry is that I am dumbing down while being here and not talking to lots of people. I don't want to lose the ability to manage our home and finances.

Sorry for the ramble.....but I'm old. 😄

Anne

ghphotog

I use daycare a few days a month to have time to myself, do some work or play golf. Our city's Senior Affairs will pay for three days a week of daycare so when that begins I only hope my DW won't fight me every day until she gets into the routine. My daycare right now is great but it's self pay and expensive.

HollyBerry

I'm still working and younger than a lot of people here (I think!). We have horses and I ride as often as I can... a few times a week. I ride my bike a lot because I can go out early in the morning and be back by breakfast. I treat myself to an exercise group with some friends every week. It's pricy but fills the social need as well as being great for my health and managing stress. It's harder to find things that I can do for myself indoors at home but I read and sometimes sew or do artsy things. These all change seasonally and I know they'll change once I can't leave my partner home alone as much. Right now, she encourages me to get out and do the things we used to do together as long as I don't bug her to join me. That part is really sad but it's easier to take her up on it and avoid an argument.

Davegrant

Thank everyone for your comments. I did get the Kirkpatrick book and I like it because of his blend of qualifications and personal experience. As my DW disease progresses and DW recently added irritability to the suspicion, memory and cognitive loss that I needed more help. I asked her PP as well and we have a visit to a psychologist on Halloween, which is the soonest they could book it. I am thinking about some medication to reduce her anxiety. But I also realize that she resists medication. One day she is in extreme pain in her stomach because she refuses to take her acid medication and the next day, she is a four-year-old refusing to take the pill because she doesn't have a problem. So, even if they do give her some drugs, I suspect it will be a major problem getting her to take them. I went to counseling because I know I have to change and that she can't. I want her permission to get away and because of the disease she can't give it, so I have to change that personality flaw in me. I hope to keep an open mind as counseling is new to me and give it a chance. So, thanks to all of you for being my support group.

Drapper

Davegrant - please don’t take this comment wrong .., you can give her anti anxiety meds in liquid form without her “approval” in her food. She doesn’t have the cognitive knowledge to know what is best for her. Having high levels of anxiety is a painful mental situation. You would be doing this out of kindness. (Maybe you can get on wait list for psychologist Halloween is crazy )

Fyi - there is also a natural alternative to meds for stomach acid called gourmet reflux. It tastes good and could put it on ice cream. My ENT recommended it to me. He takes for his reflux. I buy it from Amazon.

SDianeL

Davegrant - My DH was diagnosed 2 years ago but had issues for about 5 years. He's 78. I'm 75. I'm almost at the point where he needs medication so he's not so angry and is more compliant. He doesn't see danger and has no logic or reasoning anymore so he does bizarre things like going out and checking on the car in the parking lot at midnight in his underwear. When I say don't do that he screams at me not to tell him what to do. Until 3 years ago, we traveled full time in an RV. Always on the go and a great adventure. So glad we did it when we were younger. The last 3 years have been hell. Finally got his diagnosis, got caregiver help from the VA, sold the RV, moved into a small 1 bedroom apartment, and got caught up on my doctors appointments I put off for 3 years. Now I don't know what I'll do when the caregiver comes. My sister also has dementia and I will visit her every other week. But with our travel lifestyle we no longer have friends in the area where we live, and all our family members are working which is a good thing. So I'm doing what you're doing. Trying to find out what I like, not what "we" like. The caregiver comes in the afternoon one day a week and it's too hot and humid here in FL to exercise then. I love to read but everything is on Kindle or online so I tend to stay home. I did decide recently that I will find a nice bookstore with a coffee shop and get out and sip coffee and browse the book store. That's at least a start. I also do genealogy. The VA in our area has a caregiver walking group at a nearby park. It's in the morning though and that won't work for me, but maybe there's one near you or maybe you can form one. See if there is a local support group you could go to in person. ALZ.org might be able to help? We have a Byrd Alzheimer's Center & Research Institute here that is affiliated with USF Medical University and has support groups. Maybe check to see if there is anything like that where you live. The YMCA has things for seniors and many insurance companies pay for Silver Sneakers membership at gyms. Keep us posted.

toolbeltexpert

Dave I have started getting out, of course dw being in a mcf is the only way I could do that. As we all know a caregiver becomes as isolated as the pwd which leads down some hard roads.

Before I started taking care of me I was depressed quite a bit. After selling the farm and moving the new house was just as depressing and being home wasn't good, so I decided I needed to change again so to say. Having started to met new acquaintances is what really has helped me. Having something to look forward to,like going to a local event with a friend on the Calendar is great. But even that has its own pitfalls, guilt is always trying to find new places or reasons to beat me up. I am constantly resisting that.

It's coming up on 1 yr since dw has been gone and no idea of how long this will continue is always looming out on the horizon. Long term planning about any new relationships is on hold as far as some things are concerned but that's another conversation.

Dave I wish I had a great idea but I don't, we must continue to manage every new day not only for our lo but ourselves as well.

Stewart

Otterly

Dave, my DW was diagnosed 2 years ago with MCI. We entered a clinical study in Florida, where we lived at the time. She was rejected during the evaluation period because she has vascular infarcts, and the study was for a medicine to reduce stickiness in the brain. So far that vascular dementia indication is the closest we have to a diagnosis. At this point I am convinced that there is nothing different we can no matter the diagnosis.

I am happy I am here to care for her. I have a new mission in life…her care. I’m 69, she is 71. I’m a mostly retired real estate broker. My attitude is positive , but I’m cautiously preparing for the future, with help and advice from folks like you and others

My wife presented more of a linear thinking problem than short term memory initially, now it’s both. Separation anxiety is high. But she’s knows her disease. I get her to watch Careblazer and other you tube videos with me.

I added what we smilingly call “The Queens Nest” an addition to our vacation home that is a separate building - a bedroom suite with fireplace, wet bar, large sitting area, tv, and dining area. Like you I’m an early riser, I get up, go to the main house and let her sleep late. Mornings are mine .

I love doing all the cooking, and like your DW, mine continues to laundry and dishes.

I built a chicken coop . Got the chickens , and bring my DW into that environment. She loves getting in the run, feeding the chickens, and getting them to sit in her lap begging for treats

I was able to immerse myself in hydroponics, and have a very productive garden that feeds us.

Keeping busy with renovating the house to prepare the house for her and the future occupies a lot of my time

I added a exercise room and put in a Peloton type recumbent bike, DW has no interest in it , so I also excessive on that.

Reading a great deal also is a “ for me” activity.

i try to get her involved an all my occupations, but she generally opts out ( except for the chickens ) and once she opts out, as long as I check on her often things are fine.

For now.

Gregg