Having Mercy And Compassion On My Partner.

[Deleted member 12723]

Thank you for reminding me that I am not alone. I do have a small family that cares. I think I am feeling sorry for myself again today. I need to stop this.

I agree I do not know what I will do until the time comes. I do not yet know how hard it is going to be.

I do alot of saying I love him and hold his hand. He had a chance to get a cane and a walker from his doctor and he turned it down. He is insisting on being independent as much as he can.

He gets so frustrated and I think angry at his new limitations. He is snoozing again before he takes his shower. I cannot believe how much he sits with his eyes closed. His head is lowered and the dog sleeps on his lap.

I will feel bad when he cannot use the phone anymore. When he needs me he comes to me and I have to jump up and help him. I am used to that.

It is not for sissies that is for sure. I hope this never happens to me. I am in a trnsitional space, and limbo.

It is very hard to watch him fade away. So hard.

 

[The Albatross]

Personally, I choose not to focus on the "slowly dying" part and focus on the "appreciating the time" I have with them. I am not big on premature grief. It does nothing to empower or enable me to provide for the client or family menber. I'm a firm believer in finding and holding a thought/feeling/belief that best serves me in difficult situations. I also set a boundary. The illness of the person I am caring for is not "my" illness. It is their illness, their process, and it somehow makes it easier for me to be better equipped and empathize with their ups and downs to end of life.

 

[nursenurse]

Hugs to you, Gizmo. You will find your way. No harm in feeling a little sorry for your self. I honestly don't think you are. I think you are just stating the way things are. And that it is a difficult road. Once you get some help in, it will be a little easier.

Albatross, I hear you, and you are so right in what you say. It can be so difficult for some people to separate themselves from the disease process of their loved ones, at least that was my experience when I worked in palliative care.

Gizmo, I think you will have some easier times ahead care wise, once everything is laid out on the table for you. For now, he is here today, not having a horrible day. Leave tomorrow for tomorrow. I will pray this week brings you the help that you need to get through all of this. Amen!

 

[Deleted member 12723]

Thanks nursenurse. I am feeling sorry for myself today. I need to guard against this because it is counterproductive to my personal well being. It only brings me down into the depths of the depression

Tommorow he will want to go to the bank with me and get a singed piece of paper with his name on it. I do not understand what that means. He was rambling and mumbling.

But to his credit, he found the paper for the property taxes to put with our other papers. I do not know how he does it. Sometimes he has his wits about him and can accomplish stuff and other times he does not.

So I will go to the bank and let him talk to the teller. It is embarrassing when he is in delusion and trying to deal with a proffessional person. It does not have anything to do with me. I really do not know what he is expecting to get.

I hate how he worries over the money. He will get my wallet out and look at all of the canceled checks. Today I had to use the paper to connect him to the bank to get his balance.

I need to seperate myself from from the disease processl I wish there was a class I could take.

I agree it will get easier once we get the ball rolling on the next phase. We are having a sort of good day and I am grateful for that.

I really need to seperate it is the disease that is calling the shots. I need not to be codepent with him.

I need to let this stuff roll off of me. I tend to take it personally, and I am the only one who can change that.

 

[Mercy]

I am so tired and we are just getting started. He is fading so fast each and every day. It is a real heartbreaker. I hate this.

I am sad for your heart breaking time. I understand missing him while he is still there. Yes, he is fading fast. God knows the day and time when he will be called home.

So much of the time my H and I enjoy is talking over old memories that only he and I share. It does help me 'come back' when he has been verbally abusive. Best was when we were at the altar in our church's little side chapel. When it came time for our vows, he said,"I take thee ahh, ahh" The best man said," Barbara, stupid." So my husband to be said." Barbara, st." I almost got married as Barbara Stupid, like Sue Ann, or Linda Joe.

Grief now is real and very present for you as well as the burden of making decisions alone. Maybe, writing out each good memory that pops up even in the form of loss might be really good. Let's say you remember something like how much you both liked working in the garden and how someone got spritzed by the hose. It became a running joke.

May God bless you and strengthen your compassion which comes from Him through you.
May God bless you with patience and kindness which comes from Him. The Holy Spirit prays within you all the time.

 

[Deleted member 12723]

Thank you so much for what you said. I really appreciate your kind graciousness.

This disease is insidious. It really triggers me and it becomes very hard when that happens. One day at a time. Thank you for sharing your faith. I need a fresh hope in this ugly situation.

How we need some good days around here. I hope they come. Hugs.

 

[Deleted member 12723]

Well I woke up feeling happy and cheerful and am battling to stay there. He has really bad delusions today.

I called to get a check electronically transferred into my checking account and no one was there so I will have to call later. He wants to get a lawyer because he thinks I am taking money out of the account.

He is being really cruel to me right now. He does not like me. He wants to get a lawyer and put it all in his daughters name instead of mind.

I called member services to see if I could get any kind of people out here and our HMO does not cover it at all. We would have to pay for it out of pocket. We are entitled to six months of hospice care. But that is a long way off. My brother in law and sister in law will be making calls today, since it is a weekday.

I am afraid that it will all fall on my shoulders. He does not like me today. He is being so mean to me right now. I tell him I understand but it is not helping. He says I am not giving him his dignity. He is afraid that I am going to take the money from the check that I have to deposit. He does not feel like coming with me after all. He was going to do that yesterday. He does not trust me.

He wants me to bring him back a receipt. He keeps on talking about dignity. He is angry with me, but when I pointed it out he calmned down.

He will come back and talk to me some more. He brought out the money he was saving up to repay the checking account for the sliding glass door. I do not know what made the change in his trust for me. I have given up on how his mind works or does not work.

I keep on telling him I understand. He is counting the money again. He is not feeling good. I swear he has something else wrong with him, but they did a battery of tests on him and he came out healthy and only has parkinsons and lewey body dementia.

So he is trusting me with the money because I am bringing him back a receipt. I suppose things could be worse. I suppose things will get worse. I had to take anxiety medication.

I swear I think I will get me a pack of cigarettes. I am craving one. It satifies my tendancies of depression. I really cannot afford to smoke anymore. Mabe I will not smoke around him. I will only smoke when I am alone.

I am so discouraged that our HMO does not offer any services to us.

She did say that I need to take him to his family doctor and see what our options are and we need a case manager and his being a vet will help.

It looks like I am on my own. I feel ok about it. I will get used to it. I will have to bathe him in the bathtub. I do not know what to do about shaving him. He has a partial beard. One day he shaved it too close and I would be afraid of messing him up.

His brother and wife and his daughter and her husband live too far away to be of much help.

I do not understand his anger and mistrust towards me. I do not understand why he does not like me at all. He imagines that I am doing drugs, coke. Along time ago I took a drug test and he said that I quit taking drugs for three days before I took the test. At the time he apologized to me proffusily. He was really sorry. I think I will buy me a pack of cigarettes today.

I feel I am regressing. He got on me about my weight. Yet he has also gained so much weight that he cannot button the top buttons on his levis. He just wanted to dump on me.

He is counting the money now.He will send me alone. He does not feel good.

I have decided that I am going to do what I want and not appease him anymore. I will not be defeated by this. I will be strong and deal with what ever comes my way. I was able to let his mean words roll off of me by telling myself that it is the disease talking.

He really does not want to fight. I am the only one he is mean too. He mentioned the word dignity today. He wants his dignity.

I will try. But if someone asks me a question I will answer it. He has not taken his shower yet. Well I made two of the three calls I was supposed to make.

We have some valentine chocklates for the girls. We will drive over and drop them off for them. I will be glad to see them. My husband puts on a happy face for everyone else. He picks on me.

I have a friend who mom has dementia really bad and she said the cruelest things to her. But she did not place her mom, she took care of her until the end.

She said she does not know what to do with herself now that she is not a caregiver anymore. She has peace and relief and she misses her mom. She was taking her mom out for breakfast, lunch, and dinner at different time. I cannot get my husband out of the house. Well this is my rant for now. Probably will be more later. I am hanging on to being cheerful still.

 

[71nothing]

(((Gizmo))))

There is not much I can say but I feel for you. Have you heard the song "KeepYour Head Up" by Andy Grammer? It's one I like when I am feeling overwhelmed.

 

[Deleted member 12723]

Thank you 71nothing. I woke up resolved that this thing will not defeat me. I have finally reached acceptance of what is. I made the call to member services and our HMO does not cover assisted living. They do provide hospice for the last six months of life so at least I have that.

I am determined to take care of him. I have changed by accepting my situation. I let his cruel words roll right off of me and I tell myself that it is the disease and not him. He has become the disease. He wants me to take care of him. He wants his dignity so I have to figure out ways to give it to him.

I will keep on doing the best I can. I wish the family would call him and talk to him. he feels forgotten and abandoned. He is so lonely. He is so bored. He is so sick. I really feel for him. My heart breaks for him.

He knows he is dying now and he says he does not care. He knows he has no control over his life anymore. When he is being mean at least he is talking and mabe I can get some clues out of him.

I came so clost to getting a pack of cigarettes today. I cannot afford to smoke anymore. It is really hard.

He is going to check the mail now. He even got on me about my weight. He can be so miserable to be around now. I have accepted it. I tried to say I understand to what he had to say to me.

He did tell me that he appreciates all that I do for him. That was very nice of him.

He does not trust me with the money and yet he sent me to the bank alone to deposit the check. I will have to take it one day at a time. Thank you for your caring and your support.

 

[nursenurse]

Hi Gizmo,

I hope you are having better days, and that you have some answers from the calls his brother was making on your behalf. It is so hard not to take what our loved ones say personally, but if there was ever a point in time to practice what I call a healthy detachment, this would be it :)

I don't know much about your healthcare system, I am in Canada, but hopefully the VA will be of assistance to you. You are doing everything you can, I admire you so much! You are in my prayers, I hope you will have some answers very soon so you can make plans, and have a semblance of a life so that you two may enjoy some of your time together. God Bless!

 

[Deleted member 12723]

Thank you nursenurse. I appreciate what you had to say. I am practicing healthy detachment now and it has made a profound differnce in my life. I tell him what the doctor told me to say, I understand and it calms him down somewhat. He is not feeling good at all. He was mistrusting me with his disability check and was going to go to the bank with me.So I brought him back a receipt. He was not feeling good and did not come with me.

I have not heard a thing from my brother and sister in law. It is only Tuesday and it is probably hard for them to get ahold of people and get some answers. I am in suspense. I called member services and they said medicare and senior advantage did not cover assisted living services. I think I will have to pay for it out of pocket. I will find something.

My daughter called me today and she is very sick again. But I got out of the house by getting frappes. He is going outside now to check the mail. He does that every day. He was snoozing.

I am practicing a very healthy detachment. I do not take it personally anymore. It is not him it is the disease. He did say a nice thing to me. He said he appreciated all that I do for him. That was really nice and I treasured his words. He has not had delusions today. No bills in the mail today. Good. I will have to ask my brother in law to contact the VA for me. Mabe there is some kind of help there. I will find something. I will get help.

I am glad that he is still functional and can take care of himself still. I had to put the plug for the toothbrush in the wall and the nightlight for him. He managed to shave today. He has a short beard. I do not know what I will do when I have to shave him. I guess I will learn as I go. Today is a pleasant day. I was sick this morning but I feel better now.

I will go and see my daughter and my grandchildren on Thursday for Valentines Day. We got them alittle something and we will go over there for alittle while. I so appreciciate your support. Thank you so much. Hugs.

 

[Deleted member 12723]

I am being very gentle with my husband. He has his routine and is satisfied with that. He knows the dementia is hitting him hard fast.

I am being very patient and calm with him. I am doing what I can with him to help him. Yesterday I had to help him get fully dressed for the first time. I am getting better at doing things like that.

I will have to help him figure out his shaver today so he can shave. Yesterday he wanted to go out and get a haircut and I got a shampoo and a haircut too. We both feel alot better now. It was so nice to do something with him outside of the house.

He spilled his cereal again today and I calmly swept it up. I just know we are going to be ok through this. I am so grateful to have him

I got a break last Saturday, he did not feel good so I went over to my daughters house by myself. I cannot remember the last time I did anything like that. He was ok at home by himself. He just sits in his chair and snoozes with the dog sleeping on his lap.

I will miss him so much when he is gone.