Hi AC Forum,
I feel like I run the gamut of emotions on a weekly basis. I think that is a difficult side of this caregiving. Not being able to fully satisfy - or not being able to satisfy for what should be a normnal period of time. And on the same token know that each day you go down this path you just running to the finish line.
It's the craziest and horrible life as I am not able to live my life, yet I have a hard time thinking of my mom living with less. Also not being the face of which she says to at first seeing her and asking her how she is, "Better now that I see you!" Knowing that you are the comfort in their sight. Yet what it takes from one feels enormous - emotionally, monetarily, physically.
How are you doing?
LastOne
Erinm60, yes, I am able to hold his hand, stroke his back, curl up in bed with him. He's up today. Gets up, walks to the table, eats, and goes back to bed but at least he is no longer bedridden. At least, not for now. We started this journey about 5 years ago but the really hard part (incontinence and difficulty communicating) only started about a year ago, although it seems like 10. I plan to keep him home as long as I possibly can, though.
Sorry to hear of your plight. I'm concerned about the abuse, even though it's verbal at this point. With dementia & ALZ there is always the chance, down the road, there may be a physical confrontation. First & foremost you have to keep yourself safe.
Your husband, & you, should have an experienced & knowledgeable medical team, with compassion for you both. The team may consist of a neurologist, a psychiatrist & a social worker. They are there to support your husband & you on this "new normal." If your husband is suffering from depression & you share any kind of abuse the doctors may suggest that medications be introduced. A social worker should be able to advise you of resources that are available in your state & county; agencies, day programs, seminars, support groups. These are tools you will need to educate yourself & to give you the support you will need as his caregiver. It sounds like everyone isn't on board right now & things will get worse due to the progression of ALZ.
As a caregiver to my brother we both struggled with his anger & depression from day 1 of his diagnosis. True words were spoken, "You can't win battles so don't try," an other, "Less is better." Both meant the same thing, don't give ammunition to angry outbursts. It takes getting used to but try & ignore them, change the subject, "What a beautiful bird out there!" You do learn to grasp at anything to diffuse anger & that it's ok to fib. I learned to listen to my brother, reasoning & my tears were useless, saved for myself.
Educate yourself, be focused & stay strong. Take care of you as well. This forum is great. The Alzheimer's Association, available 24/7, is also excellent. Love & Caring = A Win!
Blessings 🌸
We have to ask ourselves if a respite, or, any outside care is a respite for us? I know I always am concerned, whether it's a facility, day program or even an aide. The combination of this d*** ALZ, my brother's old dominant personality & inexperienced personnel (who always claim otherwise) is not going to make a stress free "Zen" experience for me.
So what is our recourse? If there's not a loving & willing family to share caregiving we have to trust others, yet with caution it seems.
The trials & tribulations & no book or seminar "Tells the Truth & the Whole Truth." We just do the best we can. Blessings 🌸
My mother has been getting weaker, so I'm reluctant to leave more than a few minutes at a time. It is making me a nervous wreck. I try to just put it in God's hands, but that is hard to do with my mother, since her needs come often. I am finding myself hoping she passes quietly in her sleep while I still have a thread of sanity.
I just get nervous about Mom's catheter and switching the large Foley bag to the leg bag. Sure enough when we returned home I went to empty the leg bag and parts of it came off! I don't know if my Mom's pants rubbed against it too much or what happened?? It was attached with 2 good Velcro straps. So I just switched it to the large bag.
Today was not a good day. Mom pulled the catheter out and I called the nurse (we have a nurse that comes twice a week). Nurse put in a new catheter and checked out Mom. I am simply not comfortable with her wearing a catheter. I would rather change her "pull-ups" and clean her.
Tomorrow is another doctor app't with a urologist so I am hoping he will say she doesn't need it anymore.
These days my brother prefers his couch for everything it seems. I notice he is slouching a lot more these days, even in the car. I have to prop him up to sit straight to eat, he will not do the table & chair thing at home. I have to encourage him to sit at the table, turning off the tv, hoping he will focus more on eating. It doesn't always work, he may stand to eat, but I'll take that in lieu of sitting/slouching all day. At his day program he sits round robin, go figure???
We've had no falls, Thank God. If we did, I would have to call 911, I could not pick him up, he doesn't get the "let me help" thing, I'd go down. If he slouches to the floor, the couch is low, he can get up, but it's when he wants to. If 911 ever has to be called, I know that means hospital, everything is starting to be an "ouch" moment, right up with his favorite, "no." Yet he can move fast!
I know a "when" time is coming & I am dreading it for him. I am envisioning an increase or new meds, being in a wheelchair rather than ambulatory, concerned about the experience & knowledge, as well as compassionate staffing. Do we just let these concerns go? How?
The dilemmas of caregivers has no end!
Blessings 🌸