I'm with my dad every day until I set him up for dinner and go home. He's okay for the most part and I monitor by an ADT security system with cameras and any doors that open to the exterior I get a text message and a video clip (to see if he exited) or I can watch live any time I wish. My question is this - I don't have backup; and as of today my doctor is threatening to hospitalize me for depression and exhaustion. What will happen to my dad if he's left alone?
Let me tell you something... at the beginning of my mom's diagnosis of alz, I was trying to take care of two homes, two yards, two sets of animals (I am also disabled and a diabetic). I was so overwhelmed and exhausted at first that I was dropping alarming amounts of weight but not really keeping up with checking my blood sugars - just taking my insulin. I lost over 100 pounds and never adjusted my insulin and had an episode where I don't remember anything for over 4 hours. When I "came around", the house was a wreck, testing strips everywhere, furniture knocked over, broken collarbone and ribs... I can't even begin to describe what happened except that I knew I needed 911 and had the phone, but I couldn't figure out what numbers were 9-1-1. I must've known on some level that it was my blood sugars because when I can start remembering, I was on the floor next to the fridge eating dry cereal from the box. When I was finally able to accomplish taking my blood sugars, they were under 35 and wouldn't even register on the meter readout. I never went to the hospital because I was so afraid for what would happen to my mom, and like you, I had no backup, no family help, etc. Because of that, now I am dealing with a bum shoulder, arm and a badly knitted broken collarbone that causes me so much grief and has limited my physical abilities even further. The doc says it has been too long and is too late now.
I lost my Mama on Feb. 2nd of this year. It had been almost two years since I had been to the doctor. Was ordering my insulin online because I just couldn't afford two hospice RN's hourly wages when the doctor is a 3 hour trip. I almost killed myself taking care of her.
PLEASE, honey... don't do that. You won't do your dad any good at all if you're not around. If you think the beginning of being overwhelmed is difficult, just wait until it starts to snowball. :| I know how much it hurts to even think of making those kinds of arrangements, sweet thang. To think about what will happen to our loved ones if anything happens to us (the caregiver) is so frightening, but you will virtually GUARANTEE that outcome if you don't start taking care of yourself.
Take a deep breath and pick up the phone, hit the computer, look for respite help. Medicare allows 3 weeks respite care without any serious financial costs. Is that enough time for you to get medical care? Talk to your dad's doctor and see if he'll order that given the circumstances.
Don't be afraid to reach out, honey. I know it hurts. I know it's hard. I know it sometimes even makes you feel guilty and less than a superhero. But remember in the midst of those hard times that you are your dad's superhero and our hero... and all heroes NEED recharging.
My heart goes out to you. Keep your chin up, keep trying to take care of yourself because there is only one you... and you only have one time around to take care of yourself.
(((((((((((Hugs to you)))))))))))))
Hire an agency caregiver. I have had some in for respite and then two times for hospitalizations. Out of seven agency caregivers, only one was not satisfactory. If you have a relative or neighbor to make unannounced visits, it would be good for your peace of mind. Or you could install video monitors with computer feeds for you to check up on your own. It can be done without putting him in a NH.
And get yourself some respite care at least once a month so you can get your hair cut, see a movie, shop. If your dad is a veteran, get him to the nearest VA clinic for care and they will send out personal care assistants and respite care after getting in their system.
If I could go back I certainly would have done things differently...all the "be grateful for the small things" and "enjoy the moment" cliches are turning out to be true. "Nobody's perfect" is no longer just a saying on a refrigerator magnet, it's become my life motto! I can't tell you how many small things I am grateful for at this point -- even a moment of laughter together that has some of his "old" self.
Today was tag-team with the caregiver for 2 hrs just to get a few tiny bites of squash into him. 12 days post-surgery & he's probably eaten 1500 calories in that entire time. Ice cream has been 90% of that. Not ideal, but ANYTHING in the stomach is better than everything left on the tray. Basically he is going to starve to death if something doesn't turn around soon.
Both concepts helped tremendously. Food spots on clothes matter less than being relaxed.
For myself it also became much easier to cope once I realized that I couldn't "fix" the dementia by correcting his misconceptions, that I was GOING to make mistakes (but everyone does), and that the only thing I could do is live in the moment with "my" AZ person as he was at that moment in time.
It took awhile to let go of the little things (buttons askew), & to enjoy whatever we could (a little tea together in the kitchen, him telling a story I'd heard before...but now disjointed), go as slowly as needed (trying to rush just freezes him up anyhow), be grateful for what gets done, don't beat myself up for what doesn't, vent to friends,(be incredibly grateful for friends that let me vent!), take as many opportunities as I can to grasp bits of "normal" for myself (a walk around the block, a cup of coffee somewhere, going to a movie with friends--I went to one this year!).
Biggest thing was learning to let go of things, and let others step in and do them. I'm a control freak, and try to FIX everything, and this isn't going to get "fixed". It's just a matter of as much good as possible, and as little bad, as little pain, as much feeling listened to as possible, as much personhood as possible.
Per my AZ friend, I am "wiser" now, and also I have "done a good job", and if he were in my situation he'd focus on living his own life -- funny how perceptive he can be at some moments.
Hugs.
As I have said before…'If the lifeguard does not stay afloat, nobody swims'! Please, PLEASE take care of yourself—not unlike putting your oxygen mask on before your child's [the airplane drill]…you MUST have air to operate/function! I do not know where you live but try 'Care.com'. I believe they have become national & have been around for 2 or 3 years—a great resource!
My prayers are with you & your Dada.
Much Peace,
Enriched
You need to contact some Caregiving Agencies, Elder or Aging Caring Government agency for your county. Many AL places have respite care, give them a call. B & C also do respite care. Start Googling these subjects with your city or county name to see what come up.
Take a deep breath, you can do this. God Bless.
First I would like to give you a cyber-hug and big sympathy. My precious mom nearly "killed me dead." I was in very bad shape indeed. I lost Winnie last Thursday morning. If you are as wiped out as I was, you may not even be able to step up to the plate to make a plan. Please remember that thankfully there is a lot of care out there. You could perhaps even Baker Act your dad for the 72 hours to be able to plan. You could contact Family Protective Services and there are a slew of respite organizations out there. The senior day care mentioned above is a superb option in the short term. Do you have a church family? I finally had to think outside the box and take emergency measures without feeling guilty. Sincerely, you hear it so much it sounds cliche but you cannot help your dad if you are wiped out. Hospice offered me some wonderful wisdom around not feeling guilt. Many small things helped. One of them is to ask yourself what your dad would want for you. If he loves you, he doesn't want you to be exhausted and depressed.
A social worker at a hospital (the one you may go to?) will know a lot more options. All the best of luck, V55