Having Mercy And Compassion On My Partner.

[Deleted member 12723]

Today I realized that I was feeling sorry for myself and not putting myself in my partners shoes so to speak. He has parkinsons and dementia and it is hell on him.

He remembers what he used to be able to do. I need to be more sensitive to what he is going through. It is not an easy process. It is very hard on the both of us. He is going through hell. He feels sick everyday and he is losing so much ground each day.

I realized that it is not healthy for me to feel sorry for myself. I have to put myself in his shoes and think first how this is all affecting him.

He cannot take care of himself anymore and he panicks if I am not around. His mind plays tricks on him and he goes from unreality to unreality. He has hallucinations and delusions. I so need to be merciful and tender towards him all of the time. I cannot afford to take things personally.

If anyone has any suggestions or tips or advise on how to keep on remembering how hard this is on him and keep me in the reality that this is an out of control experience I would greatly appreciate it so much. Thank you.

 

[Venusian]

Hi Gizmo,

I am so sorry that you and your partner are going through this. I wish I had some advice that was based on experience but I don't. All I can say is try and remember how much you love him. And like all the advice you give everyone else, make sure you take the time everyday to take care of yourself, remember to breathe.

I hope that you get a lot of real advice from someone who has been where you are now.

 

[discarded]

Gizmo, you really shouldn't be so hard on yourself. We are all entitled to feel a little bit down about things at times. You would not be normal if you did not feel a liitle overwhelmed about the situation, even if momentarily. You are human and you have needs too, needs your husband probably can't fulfill for you anymore.

I think you are extremely sensitive to his situation and doing a wonderful job caring for him in such a loving way. You should be so proud of the wonderful person that you are. Unfortunately I don't have any advice for you. My Mum sustained a brain injury 12 years before her death and although she did not have dementia she did have short term memory problems and some other issues. It was difficult caring for her and we shared the load around our large family. It must be incredibly tough for you as a soul carer.

((((hugs))))

 

[maddog]

Truly Gizmo, the best way for you to have compassion for your husband is to ensure that you have compassion for yourself. I know it's so hard, but attending to your own needs and self care, including both yourpractical and emotional/psychological needs, is not only ok, but absolutely necessary for both of your wellbeings.

Being a sole carer as the situation deteriorates is inexplicably difficult, certainly for him, but also for you, just as much but in different ways. Yes, it is important that you offer him as much support and understanding as you can, but ensuring that you have outlets for your own struggles is just as important.

I know you don't have much opportunity to get away or much chance to indulge in your own interests right now, but wherever you can, please try to do so, and to give yourself gentle permission to do it.

I really think that whatever available support services you can find would really benefit both of you right now, and with a view ahead to when he is no longer with you. I believe you were making inquiries about hospus?

I feel for you so much Gizmo and wish there was more than words and encouragement I could offer. Please please please be forgiving and gentle with yourself. You are just as important as he is.

Maddog

 

[Abstract]

Gizmo.
I think you do an amazing job and have so much compassion where most people would be strained beyond their limits in your situation. You are inspiring as I certainly don't think I could do it.

You are a human being and are going to have times where you are frustrated, angry or hurt and I think you need to honour that and have compassion for yourself and what you have to deal with. Your husband and family are very lucky to have you.

I too hope that you manage to get away more and give yourself some space especially as things get more difficult. Are there not any support groups you could join? Preferably realtime ones but if not then online.

I don't think anyone should ever aim to put all their needs or feelings aside. And on top of this you have your own PTSD to deal with.

I think from what I have read that trying to correct their delusions ends up making things much worse as they get very distressed that they cant trust their minds and then act out but I can only begin to understand what it must be like to be falsely accused and have to manage that.

Would it help to write out a clear list of who he was before the illness? What the negative and positive issues were. I know he was abusive at one time but I don't believe he was later in life. And then maybe make another list of the issues that are directly linked to the illness and that are not about him or you or your relationship such as the delusions. And maybe a plan of action for the behaviour. Then in the moment when you are feeling overwhelmed you can check back to see where you think it is coming from and where to go. Please feel free to ignore. Just trying to imagine what would help me in your situation.

Maybe it would also be worthwhile writing out the abusive past and when behaviours ended so that it can help you separate all the different issues.

Take care.

 

[Deleted member 12723]

Thank you Venusian. I will try to remember to breathe and to count to ten. I am doing my best to take care of myself. I go soft on me when I need it. Thank you for your kind response.


Thank you discarded for the reality check that I am not to be so hard on myself. It is so hard to be the sole carer. He depends on me for everything. Our relationship has changed so much. I have to be watching him to help him because he gets lost and forgets what he wants to do. If he is making his cereal in the morning, he will stand in the kitchen and I will ask him what he is looking for and I will tell him where the bowls and spoons are.

Our space rent is going up and I am afraid that we will not be able to afford to live here, and we will have to move to someplace cheaper and he will be lost because he will not know where everything is. One morning he put his pills on his cereal and ate them.

He keeps alot of this inside.

In the mornings I ask him what shirt he wants to wear and let him pick it out before I help him put it on. I try to give him choices. I am always helping him to find things. Sometimes he remembers the number of the bank and the codes to access our account, and other times I have to get the piece of paper and punch in the codes for him to hear the balance. He worries about the money so. He used to do all of the bills and he always worried about the money. That part has not changed. He still worries. When I go to get frappes he tells me not to spend any money in the checking account.

It is hard being the sole carer. I am always going behind him and pushing chairs back in, turning off lights and closing doors and cabinets. I know it will get worse as time goes by.

I just wish he could let go and allow me to handle the money without him worrying about it. Thank you for your gracious response, I appreciate it so much. Thanks for the reality check.

Thank you Maddog for your kind words of advice. I really appreciate you taking the time to respond to me knowing how you are feeling.

Thank you for your suggestion that I have compassion on myself. It will most surely make things gentler around here. I am really patient and I try very hard to be compassionate to him. But I need to work on being compassionate to myself.

Thank you also for suggesting outlets for my own struggles. I have to meet my own needs now as he cannot anymore. I am missing him so much. Today was a hard day. Tommorow will be better because he has to go and see his psych doc and this will make him nervous and depend on me. He prefers I talk for him and it is hard with the doctor talking to just him.

I think I need to call member services for what kind of hospice care I am eligable for now. I need to start the process. He will hate it. He does not like strangers and I realize that this part of the journey will be very hard on him.

i am also looking for a housecleaner too. I need help with that. I know it will take some time, but I will do it.

Thanks for saying I am just as important as he is. I need to remember this fact. My needs are important too.

You have been so kind and honest with me. I will call members services soon. I have to do these things when he is in the shower because he worries so. Thank you for your kindness to me.


Abstract thank you for your kind and thoughtful response. I am having a difficult time doing it. It is very depressing. I try to remain cheerful but it is so hard. I think if I am cheerful he will be cheerful because he is so depressed at how fast he is fading. He is really stubborn too. It will be hard with him. It will take a hard fall before he consents to a cane or a walker. His doctor offered him those things and he said no. He wants to do it himself.

There are not any caregiver support groups that I can go to. They are at night, and I have night vision problems driving. We would be really sunk if something happened to me. So I try to take really good care of myself. The worst thing I have done is gain so much weight since I quit smoking. I need to shed these pounds and fast.

You are correct in not trying to correct their delusions. It does cause troubles, but I have such a hard time being falsely accused. He talks divorce and that is so hurtful. He cannot care for himself at all anymore. I have to approach him with a go with the flow of things as he sees them. I am not very good at this. I am online in a dementia group but it takes a couple of days to get a response.

I think writing out lists would help me. I will have to do that. I do remember him before all of this happened. He was abusive at one time but he changed and to his credit he still works on not being abusive and I am very grateful for that.

Sometimes he has his wits about him and other times he is so out of it. He mumbles words that I do not understand and it makes communicating very hard. The doctor said it is the parkinsons that is doing that. He cannot take parkinsons medications because they cause very bad delusions and hallucinations. I was going crazy when he when he was on the medication.

Thank you for taking the time to help me, I really appreciate it so much.

 

[discarded]

Thanks are not necessary Gizmo. You have helped me with advice and kind words on may occasions, I am grateful for the chance to give a little back.

 

[Venusian]

Hi Gizmo,

I was just reading your response and I had a suggestion that may help. I guess it depends on how your partner would respond to it. You said that he gets frustrated that he can't remember where things are behind closed doors or in drawers. Have you tried taping a list to the doors and drawers of what is in them? Or maybe take a picture of what is inside and tape it up? If he can still keep a little more independence for a little longer would that help with the frustration?

 

[Abstract]

Gizmo, I truly don't think I could cope with it. And having someone threaten divorce when you are spending all your energy catering to them must be hard and hurtful. :(

Huge credit to you as your compassion is always there. Do you get any type of care where someone would look after him while you have a break? A weekend away would probably help you enormously. :inlove:

 

[Deleted member 12723]

Thanks Venusian for the fantastic suggestion. I will talk to him tommorow about that. I will wait and see what he says. It is an excellent idea. Thank you so much. Now that is something I can do.

Abstract a weekend away would be heavenly. I am going to call the hospitals member services to see if hospice has any services for us as soon as possible. I really do need to get out of here more. The only problem with this is that he hates strangers. I am his whole world like his security. I make him feel safe most of the time. I will have some things i will need to do. Thanks again.

 

[Venusian]

If he hates strangers maybe they can have the people who will be caring for him come by to visit a few times while you are there. Maybe if he gets to know them a little bit before he is left alone with them it will make the transition easier.

 

[Deleted member 12723]

What a great idea. I love it. He will still fight it but I have to be stronger than him in this situation. You have good ideas. Thank you so much. Big hugs.