Having Mercy And Compassion On My Partner.

[Deleted member 12723]

(((71nothing)))

You are helping me so much in sharing your experiences and talking about where your mom is. With my husband it is the same. He has no empathy anymore. It is all about him and what he wants, what he thinks. what he does not like which is alot.

He is worried about the money situation. I have some money of my own and when I go to get frappes he always tells me not to spend any money from the checkbook. He calls the bank several times a day to watch the balance of the checkbook.

He was always controlling and although it is harder for him to be controlling he still tries.

I have decided that I will do what I want from now on. He does not have to like it. But he will accept it because he cannot stop me. I know that sounds cold hearted but things have changed between us and in his childlike state we would not survive if I did everything he told me too.

I am careful with the money. He gets money each week and he is saving to pay back the bank the money we spent on getting a new sliding glass door. He will pay it back. He used to buy us frappes and pay for take out sometimes but he does not do that anymore. He pays for the gardner.

I hope the gardner comes tommorow. We have alot of weeds that need to be sprayed. And some leaves that need to be swept and cleaned up.

He has become very self centered. But to his credit he does not want to be abusive and he watches it with me. He does not want to fight.

Today he said something and I said the magic words that I understood. He said he knew that I understood and he remained calm and changed the subject. It was magic. I will keep on doing that.

I am eager to get going on assisted living care for him. I was hoping they would call today but they must not have anything to say that they found out.

His brother said he would come down but he did not know when he would come. We are waiting for his daughter to get back to us about when they will be able to come over.

I think my husband is feeling very needy of his family and I think he feels very sorry for himself.

I cannot put myself in his shoes. It is not happening to me and I do not know how this feels. He gives up so easy. He never tries to put his shirt on by himself anymore. He can pick out a shirt to wear. But he does not talk very much because he loses his train of thought.

I do not know how it will be when he cannot speak anymore.

Personally I think there will be a epidemic of people with dementia. The baby boomers are getting older. There will be more older people than younger people and people are not ready for what is coming. Nursing homes are very expensive and so is carers for people with dementia.

I am looking for a housecleaner. I am not motivated to clean my own house. I barely do housework. I keep things picked up and vacumned. I do the wash and take out the trash and take care of the meals and the dishes. i keep things running smooth. I pay the bills as they come and go food shopping. I am waiting for the day when he will not be able to go with me anymore.

He gets drained from going out. The day he went to the doctor, he was so tired afterwards. He was completely drained. He is fatigued. Sometimes I think he has something else besides parkinsons and dementia. He cannot take the medication for the parkinsons because it causes him to have hallucinations and delusions really bad.

Every day he is getting worse. He goes to take the dog outside and he forgets to take the dog. I am so glad he does not wander. He has a fasting lab he has to take. We will have to go back to the clinic. He has a appointment with a neurologist in the middle of the month. His family doctor insisted on it.

My HMO is really good about making us have doctor appointments.

I do not know how he got pneumonia. He is ok now. I did some research online today about the end stage of lewey body dementia. He will be bed bound and he will be a vegetable and it said they die of asphixiation and pneuemonia, I guess that is why i was so scared when he got pneumonia.

He is very healthy. He always used to take care of himself very well.

The selfishness is hard to take. You are so right. Everything is about him. But he is uncanny in that he shows his true self to me and he wears a mask with other people. He does not like me. I think he resents me. I do not know why. I wish I did. He does not trust me with the money.

He cannot write a check anymore and he can barely sign his name to his check. I will have to check into electronic transfer for the check. I will call on Monday about that. I will call member services too.

He does not call anyone. He does not know how to do alot of things. I will have to get the oil changed. I do not know if he will come with me or not. I will have them check my tires and wash the car. We sold our jeep jusr in time.

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.

 

[Deleted member 12723]

(((Abstract))) I so appreciate what you have to say.
I found it really interesting about the brain and what is left. That is exactly what is happening to him.

And he is a naturally controlling person, always was. I think it is very hard for him to be dependent on me. I think that is why he does not like me. I am in charge and he is completely dependent on me now.

He is aware that he cannot do things he used to do. He tells me that he can still drive, but when we needed to give our heep a jump he got in the car and did not know what to do. I wonder if I should call the DMV or just wait until it is time to renew his liscence.
Another hassle I will have to deal with. I will have to get him a identity card. All these things one has to do without instructions and it is a learn as you go.

He is highly aware that he losing function. He is terribly depressed over this. He was always a controlling person and I had my hands full with making boundries. But now I am in control and I think he hates being so dependent on me.

Mabe that is why he still calls the bank to find out their balance everyday. He does not know how to call anyone else.

I guess the more I assure him that he is ok the better he will feel.

The cheerfulness aspect is weird for me. I think he is in the anger part of his grieving process. He still has denial because he keeps hoping for a cure so he can go back to the way he was. I am sure he is highly aware of losing function. And he hates it. Thus he strikes out at me. He does not want to fight me though.

Each day is different and I do not know what to expect anymore. This plays havoc with my ptsd and is very triggering. But it is like magic to tell him that I understand.

I am reading On Death and Dying by Elizabeth Kuebler Ross and it is helping give me perspective into what he is thinking about. He told me today he wants an autopsy and he wants to donate his organs. So he is thinking about his own death. I think he thinks about alot of stuff but he keeps it all inside and the pressure builds.

I did some research on the final stages of parkinsons and lewey body dementia and it said they die of aphixitation and pneumonia. I think that is why I was so scared when he had pneumonia. I know it is a killer of elderly people and he is sixty five.

I hope my family comes through for me too. His brother said he was coming down, he just did not know when. I know they are making calls on my behalf because they always do what they say.

He thought his daughter was coming over today. He really misses his family so much. I wish they stayed in touch better. She is trying to find a day that they can come out.

I think I will call my daughter on Monday to see if she will come over and sit with him. It is so hard for me to ask for help. But it is easier than it used to be.

Again thank you so much for all of your thoughts and ideas and suggestions and explanations. I really appreciate it so much.

 

[nursenurse]

Gizmo, I look after the poor and the downtrodden for a living, and in my spare time, I work on missions around the world. I can say without a doubt, that what you do for your husband is far greater than what I will ever do for the multitudes. Sending you hugs and prayers.

 

[71nothing]

Gizmo,
I had to share this story with you. While transporting my mother today she looked at me and said "I'm really glad your husband left you" (with five kids by the way). "Now you have more time to take care of me."

I had to laugh at that one! Sometimes we have to choose whether to laugh or cry. Crying isn't an option for me yet so I choose to laugh!

I think these are the kind of stories we'll share and chuckle over for years to come!

 

[Deleted member 12723]

nursenurse, thank you for your prayers and kind and gracious words. It means alot to me. Hugs,

71nothing, thank you for sharing that story. Your mom sounds like she is doing better than my husband is. It is better to laugh than to be depressed. You are right about laughing at the stories. There are so many to tell.

I am sad that you had your husband leave you wiith five kids. You sound like you are doing pretty good now. You are a very strong person. You are in my prayers with both of your parents having dementia at the same time. You are such a source of inspiration to me. I so appreciate what you share with me.

No hallucinations or delusions today. I am very glad about that. I slept good last night but had a weird dream. It was similar to the dream I had the night before. It had people who were so angry at me.

 

[nursenurse]

My Mom would ask me "What do you have better to do?" after I had gotten her groceries, mowed her lawn, taken her to lunch, and spent time with her. I usually spent three days a week with her, on top of my own full time job and raising my family :) She just didn't get it. I found raising a parent was more challenging than raising a kid. She's gone now, but I have all the good memories. P.S. I flunked at raising a husband :D

 

[Deleted member 12723]

Nursenurse it is so hard to be a caregiver to an adult because they remember doing adult, independent things. It is very frustrating for my husband to accept his new limits. He does good on letting me put his shirt on him. I have had to help him to get dressed before. I know the time is coming when I will have to dress him. It is very hard for me to put his socks on because they are tube socks and they are so tight.

Your mom was very blessed to have you take care of her. Hugs.

 

[nursenurse]

"Blessed are they who show mercy, mercy shall be theirs..." And yours, Gizmo.

 

[Deleted member 12723]

Thank you nursenurse. I appreciate the thought.

So far we are having a good day. I am very happy about this. He does not have hallucinations or delusions yet. Hugs.

 

[nursenurse]

My Mom spent 6 months in palliative care. From the minute she got to the hospital, she WAS the patient, gave up pretty much everything she could do on her own, except give orders, lol. I kept telling her the choice of whether to do things for herself or not would be taken away soon enough by her own failing health, so she should do what she could while she could. Brick wall.

I live in Canada, so I am not sure what is available to you there, but there are these, for lack of a better word, gizmos, that help you slide socks on a little easier. Check out a home health care supply store, you'd be amazed at what gadgets are out there. I would be cutting a few of the elastics myself, I don't know how much he can see you while you are putting them on, how much it would bother him. You have enough struggles than to be wasting energy with tight socks. It's those daily small frustrations that can get cumulative and wreak havoc with you, even though there are obviously larger issues than that. So make the small things easier, one at a time.

 

[Deleted member 12723]

Nursenurse thank you again. When his brother comes down I will have him help me to make things easier. Thanks for telling me about the supply house that has things to help out.

When my mother in law was placed in a home she was dying and they brought her back. She was in diapers and bed bound. She did nothing. Sometimes she would be put in a wheel chair and she would go and visit other patients and they would lose her.

She lived for two years. We were with her when she died and she died a peaceful death. I was glad for that.

She was so out of it.

I will have to check out the supply shop and see what I can find. Thank you for telling me about that. Today I just feel overwhelmned and tired.

He feels so tired because the doctor upped his trazedone and serequel. He is slow moving in the mornings anymore. He did not used to be that way. He eats his breakfast and takes his pills and then he sits down and he snoozes. Then he gets up and goes and brushes his teeth. Then he comes and sits down and snoozes some more. Then he takes his shower and come and sits and snoozes. Then he has two string cheese sticks and then he sits and snoozes for the day until the mailman comes. We will not get mail today.

I will get hooked up to the resouces people and will go to them for help. I will get names and phone numbers. I will use whatever help I can get.

I have waited until now to get extra help for assisted living. I am really glad that his brother and his wiffe are making calls on my behalf. I feel so overwhelmned until I get in the system and get started.

He really scared me when he caught pnuemonia and I remembered that older people die from having pnuemonia. He was release the day he went to the hospital in an ambulance. I was so glad about that.

It caused me to have so much anxiety that I could not sleep for two nights and I was a basket case. It really triggered me.

I will get really strong going through this. He finally went to go and brush his teeth. My day has started. I wait until he takes a shower before I do my morning chores.

He is dependent on me. He asks me what day of the week it is. He can still tell time. He looks to me to see if we have anywhere to go for that day. I wait on him sometimes. He still can do somethings for himself. I am glad for that. It will be a slow process but I feels so sorry for him.

It is very hard and it is only going to get harder as time goes on. I think I would prefer for him to die at home with hospice. I do not want to place him but I will have to wait and see how good I can take care of him.

I will hate it when he becomes bed bound and cannot talk anymore. Oh I feel so overwhelmned by how fast he is fading. I wish he would want to do stuff. He has given up on so much.

I am so scared and I know I will be ok. I have to focus on this one day at a time and not look at the whole mountain all at once.

It sure triggers me so much. I hope I will be able to cry some more. I need that release. Hugs.

 

[nursenurse]

You are not alone, always remember that. Looking after someone in the slow dying mode is daunting. I was going to look after my Mom at home, but instead of being the nurse, I just wanted to be her daughter for a change, hence the palliative care unit. If placement becomes your only option down the road, do NOT beat yourself up over it. Some people can look after things until the bitter end, and some folks can't. It is no reflection on the amount of love you have, or your strength as an individual. Sometimes just holding hands, saying the I love you's is really all we need to do as the care giver. That's the important stuff, as long as you find the right people, whether it is done in the home or out, to do the rest. You will find what you are comfortable with. And be merciful to yourself :)