One's around me that I share with

Hoot619

Hi everybody,  The one's around me that I share with are my kids, also the people that have gone through this with their loved ones here where I live. When I'm talking to them you can see the concern in their faces, I think it reminds them of what they experienced and how they got through it  They have gone  through those tough times and share what they had to do.

   Some like me said I always will take care of my loved one at home. BUT there comes a point in time where it gets to be too much.  We almost come to a breaking point, I should have had my wife placed probably a year ago.  I'm not helping her anymore even though I'm trying to.

My friends here have told me there comes a time that I will have to do something and I wasn't listening. I've also read it here on the forum but it didn't pertain to me.   I guess what I am saying is- It can't be too early for MC for our LO but it can be too late for us.  It is taking us down also.  Hoot

Marie58

Hoot, I agree. It's the ones around us that can see what this is doing to the caregiver. I figured I'd keep DH home longer than I did, perhaps to the end. I'm relatively young and healthy, so was he. He was relatively easy to care for. And on and on. It was this forum that taught me to get DH on a waiting list. It was my kids mainly, that helped me realize it was time. Blessings to you and your DW as you enter this next phase.

abc123

Well said Hoot. I think we wait too long for a lot of things when dealing with this disease.

BlueRidgeBrutal

Hello all.  First time caller (so to speak).  My 57 year old wife was diagoned in February with early onset, rapid onset ALZ.  My mother-in-law has ovarian cancer; by default , I am in charge of her care as well.  I'm forced to detach from my own business and enact a succession plan.  Lots of changes, challenges, uncertainties.   I dread the future and get very sad (emotional sometimes) reading about this disease, stages, strategies, planning ahead...   The DIY approach isn't working so well, though I did try a couple of sessions with a therapist.   Any suggestions for a change in attitude for me?

BlueRidgeBrutal

Sorry Hoot. Apparently challenged in posting as well.  

Brutal

Annen1014

Hoot, I checked in today mostly to see how you are doing. My DH was diagnosed a year ago and is still in very eat stages. He is already 85, and I continue to hope that his age will get to him before the dementia, but my children are already concerned about the stress I am experiencing. I am so sorry you are in this phase. Wishing you the best.

jane8851

My husband had ALZ and I took care of him at home for 3 yrs. It was the rapid kind that progressed quickly. He didn't know who I was and wandered 24/7. I never got any sleep because I needed to keep him safe. One day he got out of the house and had a grand mal seizure, face down in 10" of snow and 9 degree weather. No coat and in his slippers. I had doorknob covers on the doors but he managed to escape while I was in the bathroom. I ran right out and got him turned over, called 911, and covered him with a blanket. He went to the hospital and had another seizure. It destroyed what was left of his brain. He never came home after that. Was transferred to a nursing home and was only there for 2 weeks and caught covid from the staff, and died. You never know what the right thing to do is, you just do your best for as long as you can.

Hoot619

Brutal, your still in the right place voicing your concerns. All I can say is don't wait to long before you place her, as many of us do.   In your case with 2 to take care of you can get really run down very quickly. We don't notice it but others do!  Listen to them Wishing you the best. Hoot.

jmlarue

Hoot - You are absolutely spot on. God bless the few folks whose LO's never exhibit the horrible behaviors that take so many of us down. In spite of all our good intentions, many of us are brought to the breaking point, both physically and mentally, before we act on looking for placement. We always end up behind the 8 ball. Nothing, but nothing is easy for caregivers. Best advice I received on this forum is to start looking for placement long before you think it is necessary and get on the wait lists. I wish I had listened.

toolbeltexpert

It's so hard to tell when to place? I really thought i was gonna go all the way. Then they drive off or walk away, then reality hits. What if?  You can't not sleep, for me things lined up and I held to, she can't come home. I sure hope Medicaid kicks in before I am broke. Tomorrow marks 1 week in nhf, 7 weeks since she went to geripsych. 

Often times we hit a new milestone, or run out of gas. It's as different as each pwd is.

Brutal welcome to the forum hang around, vent, read and learn lots of important stuff. If you want more responses just start a new thread with any question you might have nothing here is wrong. 

Stewart

M1

Hoot, there's never a perfect time, don't second-guess yourself (I should take my own advice).

And Brutal, welcome.  You'll get more responses if you start a new thread (no worries, this takes some adjustment/getting used to):  look for the green "start topic" button on each forum page (ie caregivers forum, spouses forum, etc). that allows you to start fresh, and more people will read it.  You've come to a good place for support, by far better than any in-person group I've attended.  That said, i'm a big believer in therapy too, and this is about a big a challenge as ever comes along in life.  It won't take away your grief, but it might fend off depression, or help you treat it, and help you cope.  Good luck. 

BlueRidgeBrutal

Thanks Hoot.  It breaks my heart thinking about it.  I too was thinking in home care, whatever it takes.  Thanks for your perspective.  Reality sucks. Sorry you have had to go through this.

BlueRidgeBrutal

Thanks M1.  I'll try that.  I'm already liking this community.

Brutal

Beachfan

Hoot, 

You are so right!  It’s never too early to start investigating placement, even if you’re bound and determined to care for your LO at home forever.  I spent a good two years researching, visiting, calling, and generally badgering a number of facilities until I had two “finalists”.  All the while, I planned to keep DH at home because he was easy to care for and only I could care for him properly.  That all changed on a dime when “the ones around me” (the kids) pointed out how poor my quality of life had become.  DH was fine; clean, well fed, well loved, entertained, content.  I, on the other hand was drowning in the caregiving.  Since placement in November, DH remains “fine”; I am rediscovering a semblance of normal life and enjoying kids, grandkids, friends and family.  It’s a better situation for both of us.  Good luck with your planning.  

Hoot619

Well she got out of her chair but than sat in the other chair of hers in dining room today at noon. Yesterday I didn't get her changed til 4PM.     Chair   which I had drenched with vinegar and water to get rid of the smell. I didn't move from my room fast enough to get her in bathroom  She said very clearly she wasn't going in there. Well to make a long story short she got up I dragged her there stripped her and showered her dried her managed to get pull-ups on.  She needed it, wouldn't let me yesterday

My sister called as I was trying to get her to sit in living room. She called to see how things are going. She found out as soon as I picked up phone.  Screaming etc she wouldn't even to listen to one of her best friends . Sis and my daughter with my wife used to do a lot together and usually just hearing her voice snaps her out of it some of the time.

   I mixed up her cocktail with 1/2 can of pepsi but she hasn't drank very much yet.  Sitting in chair with pants half on and nothing on top. A win, pants just got pulled up. I'm watching via camera from my bedroom.  My good looking face disturbs her a lot  She just tipped her pop over but did pick it right away when grabbing her pull over shirt. Also she doesn't want or allow me to help her.    This is what I go thru each morning- of course none of you have this trouble.  Your not alone, some have it easier some harder.  We never know what each day is going to be like.  And the BAD part for me is when we have a good day I kind of depend on it to happen more often.  Have a good day everyone. Hoot

She got her cocktail drank and also put her shirt on. A great big win, now for drink to work.

Hoot619

Beachfan,  I am so glad to hear that things are getting a lot better for you. That's what we all want to hear. This darn disease takes so much away from the caregiver and most of the time we don't even acknowledge   or recognize what is happening. Hoot

Hoot619

This morning wasn't so good but after her drink she started to mellow out. That was around 2 PM.   Breakfast she ate her toast with grape jelly, didn't touch the scrambled eggs and cheese. But around 2,  I gave her a toasted cheese and grape jelly sandwich and she said Thank you.

I made scalloped potatoes and ham for supper. Took longer than it should have. I had to make trip to emergency room. De slicer has the extra part you are suppose to use to hold whatever you are slicing.

  Well I was using it until de brain of mine quit working. I thought I could control potatoe ok til I got close to where I would use it.  I took 1 slice to much and me finger lost 1"x1/2 inch of skin. They glued it back on.  I learn best by making mistakes, they don't call me a Finnish Genius for nothing.    supper turned out good.  I substituted  2 cans cream of onion soup for the white sauce with some milk,  wasn't sure of finger getting in the way.

Dear wife ate all hers and said thank you again. Also she talked to Sis a little and it's after 9:30 and she is still in a good mood.   So I've had or we've had a very good afternoon and evening.  This is the longest she has been pretty near all ok in a very long time.  A Very Good Day     Hoot                    Well it lasted til bedtime at 10 , wanted to change her- No way , so I give up but she is still in a good mood mostly but stubborn as hell!!

Just Bill

Hey Hoot it sounds like the gummies are working. Enjoy your good day !

Joydean

Hoot, glad you and your wife had a good day! Sorry but I did laugh , the way you explained about your finger! I needed a laugh so thank you. Remember this good day. 

Hoot619

Well the gummies are almost gone , she will finish them tomorrow and than the choc.bars  for a few more days. Couldn't get the cookies.  Stuff does work  but results differ a lot. One day 8 hours she was OK. 

  They have calmed her down some.   This evening she was making sense but that was giving me hell and cussing me out.    I have the THC drops now but won't start til other stuff is gone. I'll be careful with them.   

 She has been hugging her little black bear (stuffed bear) at times. Once even choking the hell out of it when yelling at me. She didn't eat much or drink much today and I forgot to give her some ice cream tonight. I have a bottle of Ensure and a pepsi by her chair.

 Trying to do the best I can.  Will make oatmeal choc chip cookies tomorrow, will most likely have to hide the  cookie jar from her. Only trouble is I will know where it's at.                It still was a good day even with the not so good moments.   Hoot

toolbeltexpert

Hoot I am glad your having some success with the gummies. Anything that helps is a plus. Glad you weren't using a chain saw.

Keep up the good work. Oh and your not the only one looking for stuff after hiding it from dw. I had moved our whole house around incase dw came home from the geripsych, now I am looking for everything. 

Hoot619

She ate today 1 French toast, 2 corndogs peaches and drank 3-4 Pepsi. The drops finally calmed her down quite a bit later in the day..  Gave them to her 3 times.  I also made my meeting and when I got home she was glad to see me. I forgot to turn on light before I left and told I was sorry. TV was on so she wasn't in the dark. 

One of our better days, she talked (listened) to my sister a little but was kind of out of it.  I asked her if she wanted to talk to Jennifer our daughter tonight.  She didn't know her so I didn't call..

Gummies all gone, have a few choc. squares left but the last one she had I found on floor. It is a lot easier with the THC drops.  At least something is working  Hoot

Joydean

Hoot very happy for you and your wife with the good days! You certainly have a great sense of humor! Enjoy your good days.

Hoot619

  Jan is still home.     Ambulance crew just left. Jan hadn't got out of her chair all day long. So I couldn't clean her up. I called our daughter-in-law to help get her up. We didn't do so good, wife fighting us all the way. She ended up on floor, we were trying to get her to another chair so I could strip this one and soak it down to get rid of urine smell.

  They left here at midnight after getting her up and in other chair and told me to see Doc Monday morning.  They took pictures of infected sores for me to show Doc. We put meds on that I had for them. It took 3 of us to do it.

On another note 9/11/65 we were married . 57 years ago Jan got a husband I got a hostage Our first 17 years weren't very good for her.  I'm trying to make up for that now but the way this disease is taking her isn't helping. Hoot

Pat6177

Hoot, I’m so sorry. I pray this turns out to be a blessing in disguise. I’m sorry you’ll be spending your anniversary in the hospital, trying to figure out what’s going on. Remember to turn it over.

Faith,Hope,Love

Hoot, I'll be praying for you!  You've been thru so much and done so much to care for your DW.  Please take care of yourself and please keep us posted.

Hoot619

Last night really made me realize that what I am trying to do for Jan just isn't working at all!. I knew she had a rash and had put meds on it two days earlier, but it is infected now. Any thing I want to do for her is a battle from trying to put sox on feet to applying the cream or powder which the Doc ordered . Groin area and also under her boobs.I have to hold her down to do it and even when it was a light rash. She has a lot of strength in her arms and hands, you know it when she grabs you.

I gave her a choc square when I put the dog out at 7 AM. It is working and she is asleep in chair now.  The infection could have something to do with some of the yelling but not all.  She has been doing that for weeks probably months. 

When they were here last night and trying to calm her down after getting her in the fresh chair, I handed her the black bear she likes. She threw it at me and the rest of us got a laugh out of that.

Well today if she has any clear moments will tell her we were married 57 years ago today. I'm wondering if she will remember but most likely won't. I'm OK with that as long as I don't ever forget.  Hoot

Joydean

Hoot, you want forget! I hope when you talk to doctor Monday you will get some help. Hope Jan has a good day! Take care!