Having Mercy And Compassion On My Partner.

[71nothing]

Gizmo, I can relate so much with what you are going through. My mother has Parkinson's with Lewey Body Dementia and it is such a hard thing to watch the mind, body, and spirit deteriorate all at the same time. The amount and kind of care needed is so difficult. I also have my father who has Alzheimer's. I find the dementia associated with my mothers Parkinson's so much more difficult. I am fortunate that my parents are in a good nursing home where basic needs are cared for. My mother still requires a lot of extra care from me but at least I know if I need a break she will a least have basic care and companionship.

I can only imagine being in your situation as the only care provider. One thing I would offer up that I try to do and am getting better at is to at least try not to feel guilty with feelings of being overwhelmed, wanting to take time off, or any other feeling you have. You do so much for your husband and take such loving care of him. You can allow yourself to feel whatever you need to feel.

I also agree with those above that seeking out an occasional caregiver will give you some time to take care of yourself and refuel so you can continue to care for your husband.

 

[intothelight]

I so need to be merciful and tender towards him all of the time. I cannot afford to take things personally.

Gizmo,

First of all, allow yourself to be human. Have an attitude of compassion, mercy and tenderness towards him, but also towards yourself. Yes, this is really hard on your husband, but it is as equally hard on you.

You did make a very insightful statement as not to "take things personally". In regard to some of your husband's behavior, you are correct it is not being done deliberately as it is part of the disease progression. But what is happening overall does affect your personally, as this is you partner and the person that you love. It is normal to feel negative emotions about the situation. That is where you need to allow yourself to process these. Recognize that you are not taking his actions personally, but the situation is personal.

Gizmo, what you are going through is incredibly hard to say the least. I do not truly understand as no one can unless they were you. Just know there are many of us here to support you and help you as you make this difficult journey.

:hug:

Deb

 

[Deleted member 12723]

(((71nothing))) My husband has Lewey Body Dementia. I am so sorry that both of your parents are so afflicted and glad that they are placed and taken care of. I so appreciated what you have to say. Please stay in touch with me for I have so many questions. Right now my husband is telling me that I told him that I was going out at night and that I put something in my ice water that makes me slur my words. I am so glad he has a doctors appointment today. We went through something similar yesterday.

Thank you for the encouragement. I will call member services of my hospital and see if hospice has any caregivers for someone like my husband so I can take time off and go off and do something. I so appreciate the validation of my feelings. With his accusations today I do not feel so bad. I do not know why he is falsely accusing me of these things. I probably feel better because we have a doctors appointment today. I wonder what the doctor is able to do. I do not understand why he is doing this two days in a row.

Why is your moms dementia worse than your dads? I am curious. Thank you so much for responding to me. I so appreciate it and I do not feel alone anymore. I am so sorry that you are dealing with this with both of your parents. It would be easier to place my husband but he is too functional to be placed. He can still take care of himself to a degree.

 

[Deleted member 12723]

Thank you Deb for what you said. I am struggling with not taking it personally today. Now he is telling me that he thinks I have dementia. I am so glad we share the same psychiatrist. Now he is telling me he wants to be placed in a home because he does not like living here anymore.

I do not know why he is so into delusions so very much. I feel so powerless and helpless. I do not think he likes me anymore. He just said it. He said he loves me but he does not like me anymore. He says I am putting something in my water and he is worried about me.

I feel so low I actually cried finally. I am so grateful that he is going to the doctor today. I sure hope the doctor can help us. I am having such a hard time with all of this. This is something that has not happened since he was on the parkinsons medication which was causing such bad delusions and halluciantions.

I am just so grateful that we are going to the doctor today. I need help from him and if it means my husband should be hospitalized so be it. I cannot keep on going the way I am going. It is not so bad when he is not in his delusions. This sure is a heavy load to carry and I need more help than what I have been getting. I will ask the doctor what my options are today. I really cannot go on the way I have. I need more help today and I hope my HMO will be able to help me. I hope my insurance has a provision for me. Hugs.

 

[safenow]

He wants to do it himself.

It is very hard for us to let go of our pride and accept help. I know first hand how angry we can get when we can't do the things we want to do. The things we are used to doing. Especially when we start to be able to do things again, then find we are back to the old "I can't do that". I'm awful.

He is so blessed to have you in his life right now.

 

[71nothing]

I think the reason my Mom is so much harder to deal with compared to my father is because of the nature of the hallucinations and delusions plus she has a hard time communicating. She will start a sentence on one topic and end on another. It's very hard to follow.

One time (when my parents were still living on their own) my mother called 911 on my dad because she was convinced he was having a stroke. She insisted he was standing outside, unresponsive in the pouring rain. When the ambulance and I arrived he was sound asleep in his bed, completely dry. My poor dad was even more confused than usual to wake up to EMTs poking and prodding him. :)

Even though they are in different levels of care, in different areas of the nursing home, my mother still calls to report that my dad is being mean to her. My dad is mostly bedridden at this point so even when she visits his room there is no way he is being mean to her. She called me one time convinced that he was hiding on the floor of her living room refusing to go to lunch. I knew this couldn't be true for many reasons. Mainly because my dad is in a locked area of the home so there is no way he could be there. All the reasoning in the world doesn't change her perception and if we try to gently explain things to her she accuses us of being "mean" to her.

I guess what makes the Lewey Body dementia so hard is the extreme confusion complicated by hallucinations and delusions. Also, my mom is not that forgetful so it hard to remember how impaired she is sometimes. My dad's dementia is severe memory problems but he doesn't have the delusions or hallucinations to complicate it. He's much more docile.

 

[Deleted member 12723]

Thank you safenow. I need prayers that the doctor will put him in the hospital. I need him to be placed. I cannot go on like this. I need help now. I sure hope that medicare and my hospitalization will pay for it otherwise I will have to pay out of pocket. I am so grateful that he has a doctors appointment today.

I need to be strong and state my case and I need to be seen and heard and helped.

 

[71nothing]

Prayers and my thoughts will be with you today. I hope for a positive outcome from the doctor's appointment for both of you!

 

[Deleted member 12723]

Thank you 71nothing for telling me those things. That is exactly what I am dealing with. It is bigger than me. I cannot go through this without some help. He wants to get out of this home because he does not like living here anymore. I hope I have the resources to get him into a hospital today. I will have to be really strong with the doctor. He thinks I have dementia. I need more help. And this is the second day of this.

I went through a long period of bad hallucinations and delusions and we were fighting everyday. He was accusing me of having sex with women and animals. He saw worms on his pants and was changing his pants several times a day. So many things. He saw three of me and would not acknowledge me at all. He said I was a fake. After he got off the parkinsons medication he improved and did not have hallucinations and delusions.

I need him placed. I cannot live like this and take care of him all by myself. I sure hope the psych doctor will put him in the hospital today. He does not want to go now. He is getting scared. He knows he said he wanted to be placed in a home. Now he is being calm and does not want to go. He is thinking now. He really does not want to go. But I need help. I am so scared and confused and bewildered. This disease is insidious. It is really messing with my ptsd. If I could get him placed I could think rationally about what to do.

He is changing his tune really fast. He wants to live here with me. He said there are things that I do that he does not like. He told me earlier that he loves me but he does not like me. I will get through this day. I will get some kind of help from the doctor today. I cannot do this my myself anymore. Thank you so much for being there for me.

 

[Deleted member 12723]

I am really crying. I never cry. This is such a good release for me. Now he wants to talk. He is suicidal. I am going to tell the doctor that. He really does not want to go to the hospital. He wants to stay here with me. It is because I am his security and he is scared now. He still believes the things he falsely accused me of. He is changing his tune. He is very scared. I would be very scared too. Mabe I should have shut my mouth and not said anything.

i did this with his mom. When she was having halluncinations I called the police to do a home health check for her. Her neighbor helped her pack a bag and Itold her she was not coming back to her home to live. She moved in with us. When she was finally placed we thought she was dying because she quit eating and was sleeping all of the time.

We cleaned out the house and sold it. My husband was the executor.

He is so disciplined that he is brushing his teeth. Then he will take a shower. I have to do my morning chores. I have to do something very hard today.

I was so hoping today would be a good day for us. I thought his delusion of yesterday was in the past but he is getting worse. It is so insidious. I have to be very strong today because he is pulling at my heartstrings by saying he wants to live here with me. He kissed me before he went and brushed his teeth. He is done now. I do not know what he will say.

I am concerned because he said he does not want to live anymore. I do not know if he is planning it or not. He said do not worry I am not going to do anything. He needs more help than I can give. I am really desperate. It has only been two days of this.

Thank you for the prayers. I hope some help will come our way today. This is so hard because I love him so much.

 

[71nothing]

You have both been in my thoughts all day. I hope you were able to get some help from your doctor and that support is in your near future.

 

[Abstract]

I am very sorry Gizmo. Sending you support and strength.