Struggling to regain control of my life

RetiredTeacher

I've always been a strong positive woman with an internal locus of control...until blindsided by DH's dementia. These days my life runs me, time is not my own. I stay on top of all that needs to get done, take care of my husband but find there's no time or energy left for myself. We put everything in to caregiving and there's nothing left physically or emotionally for ourselves. How do we ever regain control over our lives??? Many have said they feel life is passing them by and they do not like the people they have become. I am struggling with this. Hubby wants me in close proximity 24/7 and it is suffocating me. I'm building up resentment. His life is eat, watch TV, go to the restroom and sleep. I am beyond bored! I feel my IQ diminishing day by day. We all hope this journey doesn't go the distance for our LOs but if it does, will there be anything left of the fun, positive, outgoing, independent woman I used to be???

Really struggling today.

Carl46

I know how you feel. That is why I have enrolled my wife in adult day care 25 hours per week. It helps me a lot.

Russinator

((HUGS))

RetiredTeacher

https://alzconnected.org/discussion/comment/240622#Comment_240622

https://alzconnected.org/discussion/comment/240614#Comment_240614

https://alzconnected.org/discussion/comment/240614#Comment_240614

Carl

What stage is your wife? My husband would throw a fit. He is an introvert and would not engage in activities. How did you get your wife to go/stay? Is it a lot more than inhome care? Having chunks of time without caregiving would be famous for my mental health!

Carl46

RT, my wife is about stage 6c. She tells me when she needs to go to the bathroom, but I have to show her where it is and help her clean herself afterwards. She can feed herself, but I prepare the food, including peeling bananas. I help her dress, so she puts one sock on each foot instead of two on one foot, but she still has opinions about her clothing. She walks slowly with very short steps, and we have a preferred parking permit.

My wife is an introvert too, and she shadows me. She doesn't like to go to day care or to be away from me, but I tell her it is necessary so I can run errands, care for our disabled son, or go to my doctor. She is very glad to see me when I pick her up at 5 pm. At first, she was concerned that someone had harmed me while I was out of her sight, but she is getting over that.

The place I use primarily serves young adult children of working parents, but they have a few Alzheimer's clients. A friend whose husband had Alzheimer's used them with success and they have a location a mile from my home, so shopping was pretty easy. They have clients who are wheelchair bound or otherwise severely handicapped, so they are accustomed to providing personal care, and the staff/client ratio is pretty high.

I am paying $65 for 5 hours ($13/hour), and I take her five afternoons a week but could do fewer days if I wanted. I haven't priced in-home care but I am sure it would cost at least twice as much.

The mental health benefits for me are great. It is a blessing to be able to go for a walk in the park or to a hardware store or bookstore without thinking about where to find a family bathroom where I can assist her. I should have done this earlier. Many years ago, a psychologist told me "No human being should have to work ALL the time." More recently, my doctor told me my caretaking was part of the reason my blood pressure isn't what it should be. DW is up a creek if I have a stroke, so I'm doing it for her (too).

Good luck to you and your husband.

Carl46

Basically, I drive DW to day care at noon and walk her to the door. A staff member greets her with a big smile and a "Hi, DW, glad to see you", takes her hand, and leads her inside while I walk back to the car.

SDianeL

we all understand how you feel. Caregiving is mentally and physically exhausting. Is there a way you can get respite care so you have time for yourself? Day care or home care for even a few hours once a week helps. Tell him it’s necessary so you can go to the doctor. That’s what I told my husband and he agreed because he didn’t want to go with me to those appointments. After the 2nd time he would ask if “my lady” was coming that day. If you can’t get respite care you should consider placing him in memory care for both your sakes.

RetiredTeacher

https://alzconnected.org/discussion/comment/240630#Comment_240630

https://alzconnected.org/discussion/comment/240639#Comment_240639

Ty all for your honest feedback. I know I need to make changes for my own mental health and to be a better wife/care giver. I am going to look into both day care options and in home respite care for him a couple of days a week. Two weeks ago I visited several memory care options. I don't think he's there yet and they were all $$$ but the thought of getting my life back was incredibly tempting. I moved our doctors appts up 2 weeks because I'm that concerned with my physical and mental health. This has really affected me over the years and it's getting the better of me lately. I know the dr will be discussing the negative affect of caregiving with me. I plan to use "the doctor recommends....." as a way to get DH to accept in home respite or day care. You folks have helped me through some very dark and difficult times. 🫂 and 🙏 for all who reside here. You help me to keep showing up each day.

CindyBum

Perhaps it’s time for what a Dr friend of mine calls a “therapeutic fib” about in home care. I told my DW the in home care was for me; that my work stress and my own aging meant I needed someone to cook and clean for us while I’m working. It worked even though my DW doesn’t love it, she still thinks she’s helping me by having a caregiver come.

t210

https://alzconnected.org/discussion/comment/240656#Comment_240656

RT,

I am, myself, a retired educator from nearly 20 yrs of various teaching assignments. I can empathize about feeling like losing yourself. There isn't much time for self-care but it is extremely necessary. Please try to squeeze in mini chunks of time or “minute vacations” throughout the day to “find the good” going on around you; try to “be present”…enjoy the sounds and sight of the outdoors even if its when you are taking trash cans to the street! Play with or snuggle with your pet:) Get up a bit early for a few minutes of exercise or reading or spiritual connection. If possible, make a coffee date with an old friend when another friend or family member comes to visit your DH! When your LO goes to sleep, try an old or new hobby or watch a favorite show. I try my best to be consistent with things like this to take care of myself physically, emotionally, mentally, spiritually. I have been told a couple of times by loved ones to make these a priority since this is a daily but long-haul disease and a “happy”, healthy caregiver is a good caregiver. Big hugs. Im walkin’ this path too!