Hay There
I slept in today - until 10:30!. Mom only wants my brother there this weekend - I won't fight it.
I wish I could say something new or good - but things have returned to the 'status quo'.

Jackie you were right - Dad is on the home health care thing that medicare pays for when a patient can't get out. I didn't get a chance to speak to a social worker at the hospital but will try with the one that has been to the house last year.
Joyce - yes it is Lasix - the diuretic.

He sleeps in the bottom bunk of a bunk-bed he made 40 yrs. ago. Nice, but not practical. Just trying to move his bed away from the wall so I can change the sheets easier caused a ruckus with Mom. "Not now, not now - let him get settled in" she says. My sister & I suggested that if we got a hospital bed, we could but it in the dining room (a bigger, more centrally located room) - Mom says No.
I keep pushing the Depends. Just take away his boxers - Mom says "No, he fights it too much". So now, there is even more urine on the floor, on his slacks, on the bed. More laundry. Just more of the same.

He can barely stand up right & walk. He grabs onto tables, chairs,the door jams, sometimes his walker. He will fall again - its just a matter of time. A P.T. is suppose to visit next week. Why? The only good I can see is that it gets Dad used to seeing & being touched by others.

He moves & speaks much slower - but is yelling more. Especially when you try to move even a towel out from under him. I cant even begin to approach the front or back (the private area) now. He gets up in my face and threatens to punch my G.D. teeth out. So I swallow my feeling and ask agin, May I please move this towel? He says, you may.
Its crazy.

I'm fighting Mom and Dad's disease ... Alzheimer's.
Mom wants it her way - but if all of us siblings stepped away and said we arent going to help anymore - she couldn't keep doing 'her way'. She can't even walk herself! SHe doesn't have any friends or relatives we can turn to to help convince her. She & Dad were loners. But I don't think I can just walk away - I would feel too guilty.
I think she wants him to die at home. I'm afraid she'll be the one to die first.

One Day at a Time - and God give me patience - that's all I can say.

Thank you all again & again for your words up support. You guys are the best!!! It gives me a boost to see your emails & posts and know you're behind me.
A 'Thank You" doesn't seem enough but its all I can offer now.
Peace
Eileen

Eileen,
Boy, does your dad sound like my Mom did, with the walking, the yelling etc. Eileen, call the local hospice in your area, as soon as possible. They will be able to set you up with them much faster than a social worker can. While in the hospital it was different. Go right to the source, it will cause less delay. And get your Dad's doctor involved. He can set it up for you with diagnois etc. They will send a liason right out to the house. You need supplies, you need a bed, and you need to stop listening to your Mom. I know its easier said then done, believe me I know, but you need to start taking control and stop asking her. Just do the things that you know will make it easier on all of you, including her. She will get used to the change once things and people are there. What could she really do it you went ahead and did what you feel is the best for all. Pout for awhile? She'll get over it.

One thing I found out is you need to stop listening to people that can't think very clearly, and at this point it is your mom and of course your dad. And your dad can die at home. Mom did. Hospice will give them important meds to make them comfortable, and give the necessary tests if something is an emergency. The nurses, cna's, the social worker, the clergy, they really know how to talk to the family to calm things down a bit. Please make that your first phone call. Then after that, worry about some financial help.

As far as the depends, just go out and buy them. I hid Moms underwear and told her they were getting too old and I threw out her others and that these were her new ones. Don't know if it will work with your dad, but just try it. And when Mom bulks, just tell her this is the way it is going to be. You know, your Mom is getting to the point where decisions are just too hard for her to make right now. I can understand how she feels, as the main caregiver thinks that every decision they make has to be in agreeance with the patient. But at her age, its just too hard to convince her of most things right now. So you need to be the one, along hopefully with your siblings help, to just do it. I can almost guarantee you she will get used to whatever you do, and so will your Dad.

I know this is so very hard on you, but the only way believe it or not to ease some of this stress on you and everyone is really just to take more control. Please let me know what I can do on this end. Give me a call if you need me.

love to you,
Jackie

Eileen,
i agree with Jackie you should call hospice. It will be so much easier with the hospital bed. Anything would be easier than trying to make a bunk bed.
You said you would ask to remove a towel, I remember asking Bill if I could give him a kiss. This disease is the worst.
You also mentioned that your mother could hardly walk herself, I don't know how she could begin to care for your dad. Physically it sounds like she really needs help. How is she mentally?
Jackie you said just jump in and tell Mom this is the way it's going to be. If the kids had done that with me, I would have told them where to go. I felt Bill was my husband and no one, not even the kids, would tell me what to do because I knew best.

You have to find a way to do what is best for everyone. Maybe by getting hospice involved they can convince Mom she needs help.

What is your dad's feelings about the Depends? I thought it would be more of a problem with him than with Mom. The lasix doesn't make matters any easier with the toilet, but is it helping with the swealing?

We're here to offer what we can so keep us up on how you're doing.

Joyce,
Yes, I was the same way with Mom and my kids. But you have to remember, we did not make it diffucult for the kids to do things for our loved ones. Eileen's Mom is not well either. You and I are basically ok as far as health. Right now her not feeling well herself, and being the main caregiver, I just thinks she needs someone to take more control of things more for the sake of herself. When you make people that help do things your way, and they know there may be something better, it just stresses everyone else out too darn much.

Even with the caregivers I had, I always compromised and took suggestions from them to make it easier on them and myself. I know Eileen can't take full control, but I think there's some things for the benefit of her Mom and herself that she just has to take over and do it. I really do think her Mom would appreciate the benefit of it after trying it, and glad that Eileen made the decision.

Jackie

I think you're right Jackie. I think I was saying that it's harder to have someone tell you what to do for your husband than it would be for a parent or grandparent. As the wife, we feel it is our responsibility? to care for our husband. Hope you know what I'm trying to say because I do think Eileen needs to get some help.
If you could get hospice in, Eileen, Mom would see how much help they were and maybe accept it. You do need help. If I were older, there is no way I could have done what I had to do. And it doesn't sound like your mother is able to do it either. She may even be glad if you take a stand. That way she won't feel that she failed only that "the Kids" wouldn't let her do it. There were times I wished someone else had to make a decision and it wasn't always left up to me.

Take care Eileen and good luck convincing Mother.

Hi Eileen,

I've been checking up on you to see how things are going, I just don't seem to have any suggestions and so little time, but wanted you to know I'm thinking lots about you and hurt with you. I can't imagine all that you are going through, hard for sure. I was thinking that what Jackie says makes sense, maybe you could just buy the Depends and when Mom isn't looking put them on him or let someone else do it, that way she can see what a benefit they are and not have to be the one to say yes. I'm sure to her giving in to those "old people" things is harder than we know, I can't imagine putting them on my husband, but if it just gets done maybe she'll be able to handle it better. Just a thought.

So glad Jackie and Joyce are here with first hand experience to help, they are true blessings to all of us. Hi girls!!!!

Take care and thanks for keeping us posted,

~Kelly~

Hi Kelly,
Glad to see you. How are things going for you?

Eileen, How are things going with your dad now?

While I'm saying hi, I guess I should say hi to you, Jackie.

You too, Lori.

I can remember ON refusing to wear depends, until I asked him to wear them just one time to see if it was easier to clean up after one of his accidents. Getting them on him made the difference. They are quite a bit like regular underwear. He finally admitted it was better than smearing urine and poop off his legs. Maybe that is what you need to prove to your mom... that keeping his outer clothes dry and being able to tear off the briefs when they are soiled is a whole lot easier to do than trying to have to pull off everything one piece at a time and then cleaning up his legs, etc.

I'm here with you in cyber-space, lean on me and the others to make it through this rough stretch in your parent's journey.

Hi Eileen,

I have to agree with everyone else about hospice. They are amazing and if your dad qualifies your mom will quickly get used to the extra help and support. And it might even be easier on all of you to have the "professionals" make the suggestions about a hospital bed and depends -- your mom might be more willing to accept those judgments from hospice staff. And they will do everything in their power to keep dad at home, the way mom wants.

I would suggest you take it upon yourself to call hospice and set up the initial interview. Arrange a time when you can be there to lend support to mom. I wish you the best and keep your family in my prayers.

Hello Joyce, Hello Kelly, Hello Deb, Hello Karenlee!!

Eileen, I know how tough this is, but you have to try whatever will make it easier not only on your Mom, but yourself too. Take tiny steps, and everything is less noticable then.

Also, while cleaning out Moms room, I found this magazine in there. Obviously one of my helpers must have brought it, and I never saw it as it was in the magazine box in the room. Anyhow, its called Caregiver Chicago. It really has some very good articles on there about help, Alz. etc. Their website is caregivermag.com

You can order a subscription right on line. I think they offer you a few free to view also. Go on their website when you have a chance. (yeah right, in your spare time!) Not pushing, just suggesting to make things a bit easier on all of you. I wish I had all this info alot sooner. It would have made things much easier.

Update us when you get a chance.

Jackie

Hi right back, Jackie,

Eileen, I've been wondering how you are doing. Has there been any change? Let us know, we're all thinking about you.

Just dropping in to check on you Eileen. How are YOU doing?

Wow, thank you all for the support, thoughts & prayers. You guys are awesome.

Dad is back at home for 1 week now.
We're trying to juggle the schedules of visiting doctor, nurses, physical therapists, the oxygen tank guy( a jerk) . His swelling is down considerably, its a waiting game now. His heart, kidneys & liver are failing. Because of the reduced swelling he can aim better into the toilet. Even with the diuretic, his pacing back & forth to the bathroom is LESS and the peeing more productive ( I sit in the dinning room, which is right outside the bathroom - he leaves the door open so I look and listen.)

The PT is a big white guy - very nice and he's coming 3x a week. Dad can take about 20 minutes and then starts yelling at him. I wasn't sure how Dad would react to a person of color - so thank God this worked out. Women of different races/colors don't seem to bother him, but he's aggressive towards our black, male neighbor. So, we dodged a bullet there.

Still trying to get my Mom to call hospice. I went to the internet and printed out the information regarding the Monarch Hospice service - a friend of mine had a bad experience with Vitas Hospice, so I skipped that place. I left it with Mom and said just read this - you don't have to decide immediately.
She did read it but thinks he's not at that point yet.
What can I do? My brother Ron is behind me, so I know I can count on his support in helping Mom make the call.

Just a little background regarding Mom's stubbornness to change - 10 years ago, our Mom refused to use a remote control on the TV, "I dont need it , blah blah" - well, when Ron & I set it up - she loved it - That's how she is. Everything new is a battle. She's an intelligent woman, just set in her ways. I'm hoping that it will be the same with hospice - hay, she didn't want a visiting nurse at first, and now she loves Nurse May.

I feel so tired and sleep as much as I can, I've got a yeast infection and I'm depressed - other than that, I'm fine.
At least I get to sleep. I'm lucky that I can do that - I'm not a 24/7 caregiver.

In a weird way, Mom actually seems stronger, happier. She says just having other people to talk to, i.e. the nurses, the PT, help her get through the day. I glad for her, that's good ... but it doesn't improve or prepare for the future.
She makes me feel, and I know therapists say no one can MAKE you feel - YOU make YOU feel - but darn it, she makes me feel like I'm weak. I'm the one over-reacting and she's the calm one.
And people, that is not true. I know it. But I become the 'emotional' child to her who gets overly upset. Well, wouldn't you get upset when someone's testicles are the size of a softball? ... that's not normal .. that needs immediate attention and you don't wait for it to 'go-down' on it's own.

She can be a bit condescending. She had a tough childhood and I know she thinks that this situation is nothing, Her parents were alcoholics so, she must have went through hell - she doesn't like to talk about it because whiners are weaklings.

I'm not whining, I believe that I'm pointing out what's wrong and where she/he need help.
Why does everything have to be a battle?
I leave the Depends on the nightstand where he keeps his boxers - she moves them back into the box.
I buy Fabreeze to help with the smell - I find the bottle stashed away in the other bedroom.
I buy a bunch of U-shaped toilet rugs from the Salvation Army for frequent changes - she keeps swapping out and drying just 2.
When I ask to move his bed so its perpendicular to wall - she says, you dont have to change the sheets anymore, that she does it, so the bed doesn't have to be moved.
I try to understand her motives. I believe she means well and thinks she's helping and making less work for me. I feel like my hands are tied. It's just so frustrating

Thanks for listening - I really babbled-on this time. You guys are helping me so much - I'm humbled.

Eileen

it's good to hear from you Eileen.
Bill was always leary of the black aide we had but I don't think it was color as much as she was loud. He didn't like that. He loved the cute little oriental aide and he best liked the male aides.

With the aides, nurses and pt's you have, there wouldn't be much difference if you had hospice except they would help with the cost of supplies.
it sounds like Mom is more resistant to the depends than Dad. I'm sure she means well and is doing what she feels is best. Isn't that what we always tell each other. "Do what is best for you".

I understand what you're saying about Mom making you feel so weak. When my girls would hug me after Bill died, I felt like the child. Maybe I just felt so alone and that's why I felt that way. They would even comment on how little I seemed. That was their protective mode.

Other than the cost feature, it sounds like you have about as much help as you'd have with hospice. The hospital bed would be good, but you could get that through home health, just ask the doctor to write a script for it. Medicare would pay for it.

I'm glad you're getting your sleep but how is Mom doing with her sleep? I'd worry about her as much as Dad.

Take care and keep us informed on how you're doing.

Eileen,
It sounds like your doing everything right. Sounds like your Mom needs to take baby steps with things, and that's alright as long as she doesn't make herself sick. Being a full time caregiver without conviences or help can really get to you.

My Mom, before AD, was horrible with change. I had to laugh when you talked about the remote. We had to get Mom cable when she lived alone for a Christmas gift, as she didn't want to "fool around" with that garbage. She became a fan when she saw that programs that she used to love years ago were now on daily. That remote was smokin' hot!! Of course with AD, change was even worse.

Remember one thing about people of color. You can reguest not to have them. One time when Mom was in the hospital, she made a bad comment about a black nurse. Of course knowing that Mom had AD, the nurse accepted it gracefully. But once she was home, I didn't want her making any comments to any person that would come in my home. SHe was not like that before AD, and we had no problem with that either. So I had requested that we only have white people come in. Between the agency we had helping me for awhile, and hospice, they were not surprised or insulted by the request. Many places had told me that black people request the same thing. It's not a matter of prejudice, its just that AD patients just don't realize to consider peoples feelings, so most will understand if you make that request. So don't be afraid to request that if it ever comes up.

I can see why your Mom after reading the info from hospice doesn't think your Dad is at that point yet. It makes them feel like the patient is ready to die. But it really is not that way. My hospice had told me that they had patients with them for a year or more. If you could talk her into just talking to a liason from hospice, I think she may change her mind. Mostly the prerequiste is that they need help, which you do seem to have alot of with the exception of the supplies and mostly that bed. But I do believe that Joyce is right when she said the doctor could request that and medicare would pay for it, although I think not the full amount. For example before Mom was on hospice I asked about a lift recliner and they would only pay less then $300 for it, and the rest was on you. The run close to $500-$600. With a bed, hopefully it will be different.

Keep babbling any time you want Eileen, we all did! It's your time now, and we're here for you.

Keep in touch and let us know what we can do.

Jackie