Having Mercy And Compassion On My Partner.

[Red Feather]

Sending lots of prayers Gizmo. Hoping this all works out for the best for your health and his. Much love.

 

[Mercy]

Dear Gizmo, What a hard time you are going through! May the universe shower you both with blessings today. May you be guided onto a path to find the caring and support you need. Sending warm, peaceful thought to both of you.

 

[Deleted member 12723]

Thanks for the support guys. All the psych doc did was up his medication and ask for a follow up appointment in six weeks. I feel like I got sucker punched. No hospital for my husband and no hospice care available.

I will have to call member services on Monday to see what they have that they can refer me to.

He gave me the straight up truth. My husband will get worse. He will end up only in delusions and hallucinations. When I am falsely accused by my husband I am supposed to say I understand that he feels that way.

He said to find a caregiver group to join which I will be looking for.

He said the day will come when my husband will not know how to use the phone. He said he would quit talking. He said he would lose motor skills and abilities.

He hopes the increase of the medication should reduce the hallucinations and delusions. I am so screwed. I feel sucker punched. I just feel numb. I knew it was going to get bad but not so soon.

I will have to get on the ball and look for any help possible. I was so hoping he would put him in the hospital for being suicidal. But no.

My insurance sucks. I have my work cut out for me. This is going to really mess with my ptsd. I have another month to wait until I can get more therapy. He saw and heard me and he understood me and gave it to me straight. My husband is sitting beside me and snoozing.

I really want to thank you all for being there for me today. I am so squashed like a bug right now. I feel so discouraged. I will gather my strength and my wits and begin to research and hunt for help. I will enlist my daughter and my stepdaughter to help me. I will go on. That is what I do. He is going to become a vegetable and will have to be placed in a nurshing home at some point.

Meanwhile I will have to have the abuse of false accusations rained down upon my head and I am supposed to just smile and say I understand so I do not agitate him further. I feel so low.

 

[The Albatross]

It is very hard, in the care of another person, to set aside your wants/needs/expectations/desires. Seldom is one solitary person sufficient to deal with the needs of a person with dementia and chronic illness. It can be a conscious choice that is affirmed and reaffirmed on a daily ... or even several times a day basis. But eventually, there needs to be a support system in place Gizmo.

Not just for your spouse, but also for yourself. We can do esteemable things, but we can wear out, burn out, become aggitated, and depressed. Hospice, volunteers, support groups, and supplemental care givers offset this for most families. It may be desirable for your spouse to prefer being with you exclusively... but the reality is, it is not beneficial for you as you go through this process with your husband.

I like the idea of calling in support, a housekeeper, perhaps hospice, and boundary setting with your spouse in his lucid moments. Though I know it can be hard to tell and differentiate moment to moment. You have had a lot of concern about his response to people coming into your home, though I do not recall a situation where this has occurred.

I did this just this week with a family that was so freaked out about their mother's reaction that they expected me to "be locked out of the house". Experienced people know how to deal with this. I knew how to deal with it. Hospice people know how to deal with it. Even when aggressive postures are made by the client.

Sometimes, you can't predict the response of your spouse, unless you try. Perhaps your depression and the realization that this is taking a big toll on you is the beginning of a time where you can supplement your care of your spouse with outside sources. There is no shame or blame or guilt in not being able to sholder the 24/7/365 (24 hours a day, 7 days a week, 365 days a year) care on your own. You are best served finding services that will supplement the measure of care you can comfortably carry.

Sometimes, I have to tell myself, "All I can do is the best I can do and that is the best that anyone can reasonably expect." I take the "tough ones", even in long term care, or agency. Because I am best suited to deal with them. But not all people are suited, and those with unresolved spousal issues are especially not suited. Unless very solid boundaries are in place for yourself and you are capable of disputing irrational thoughts on your own... it is a losing proposition for both you and your spouse.

It is sad. It is tough. But with foresight and planning, and the experience of others who have been in your situation, you can make the best decisions for you both moving forward.

It can happen. I know it for a fact.

 

[The Albatross]

Gizmo, I don't know for sure about Cali, but here in Florida, all they need to turn on hospice is a "reason to believe that the person has 6 months or less". If there is a hospitalization the determination can be made here for 3-6 months long term care in a nursing home. Bark up some trees in your state, or contact a hospice yourself and speak to their social worker or administrator.

 

[Abstract]

Gizmo,

I am so so sorry. :( Lots of hugs to you. :hug::hug:

Do you have the finances to hire a carer for a couple of days so that you can have a break? Sometimes a short break revitalises us.

Could you maybe imagine a thick perspex bubble when he has a delusion? I do that when people are directing anger or verbal aggression at me and it helps a little. I would find it very difficult too.

 

[Deleted member 12723]

Thanks for the prayers and support all of you. I am feeling better today. This will not defeat me.

My husbands brother and his wife are making calls on our behalf to see what can be done with medicare for services for us. His brother does not know when but he is going to come down to visit us.

My stepdaughter and her husband are going to come over to see us for a visit.

My own daughter said to call her and she would come over and sit with husband while I got out for awhile.

It helps to have support. I so appreciate all the kind words and suggestions and help you all have provided.

My husband is being his sweet self today so I get a reprieve from his delusions.

I got badly shaken yesterday. It was a ugly truth that I got but I am grateful that the doctor was straight up with me. I am glad he is my psych doc too. It really helps for both of us to have the same doctor in this situation.

I will have to take it a day at a time. It will be a challenge for me to smile sweetly and say I understand to false accusations. It will be a challenge to take care of him as he slowly deteriorates. My love will have to carry me through this experience.

I am so glad it is normal around here this morning. Times like this I will treasure and appreciate more.

It sure feels good to have family support. It is different this time with my husband. I did not get this kind of support with my husbands mom.

I slept along time last night. I feel better getting a good nights sleep. I will take better care of myself to get through this painful experience.

Once again thank you all so much. You have made a profound difference in my life.

 

[Deleted member 12723]

The doctor did not give me a time frame for when this will happen. He does want to see him in another six weeks. My husband is different today. I think what the doctor said will happen had a big impact on him.

I wish he would talk to me about it. But he keeps it to himself. I will try to talk to him about it later on.

He had his breakfast and he is watching the news. He likes to watch the news. He follows it. I am concerned because after he does some of his routine he sits and dozes. He is doing that now.

We will watch the superbowl tommorow. I feel lost. I have alot to do. But I am so tired and drained. I will have to think of things to do when I call my daughter and have her come over to sit with him so I can go out.

He is fading so fast. He got his pills and did not think they were his morning pills. He is fading so fast. I will have to have him placed in a home and I do not how to do that and it will be so expensive.

I have to be able to survive. I have to be able to pay for my own expenses. I will have to take care of him as long as I can.

I hope his brother and his wife gets me some kind of in home services because I cannot do this alone.

It is really messing up my ptsd. I am lucky I do not feel anxiety today yet. I guess something has changed inside of me.

He is dozing. He used to be so busy. He was always doing something. He does not feel good. The dog is sleeping on his lap.

I do not know what is going to happen next and I am very afraid and scared. But I will do my best to meet the challenges here.

 

[Deleted member 12723]

Today has been a better day. I am reading On Death and Dying by Elizabeth Kuebler Ross. It is giving me my husbands perspective on what he is going through and I have been making so many mistakes.

He is a grouch today. He was on me and I kept on saying I understand and he would say he knows I understand and then he dropped the subject and snoozed off. It works like magic,

The really hard part is not being cheerful, he hates that. It is a habit for me. I did not know how long I have been trying to cheer him up by being cheerful. I am trying to be blah. He cannot take my attitude away from me. I took a shower and will fix dinner pretty soon. The news is on and he is watching it.

I think I will stay up late tonight. It was so good to sleep so much last night. But I need me time by myself without worrying about him.

I have not heard back from family. He is anxieous for family to call him back. I hope tommorow will be a better day.

I have some books on caring for the elderly leftovers from when I was a caregiver for my mother in law. I am so glad I did not get rid of them. I will reeducate myself.

It was overcast all day. But it was warm. I hope it will be sunny tommorow. I am feeling peaceful and calm. Thank you so much for all of your great help and support. It is making a profound difference in my life.

 

[Deleted member 12723]

My husband has turned into a stranger that I do not know anymore. He has changed that much.


I am reduced to telling him I understand when I clearly do not and that keeps him calm and peaceful. I have to discover a whole new way to relate to him.

He is a stranger to me. The man I loved is gone and replaced with this person who has no empathy. He has become very self centered. He thinks about himself alot. I do not know what he thinks about. He tells me everything he does not like.

It is very difficult for me to adjust to the new him. He is fading so fast. He seems to live in a fog. He stands and tries to remember what he was on his way to do.

the only time he talks to me he tells me what he does not like or what he is going to do. The rest of the time he sits in the chair and snoozes.

The book I have been reading has been helping me. He still has hope that there will be a cure and he will go back to his old self. Denial? I do not know. The doctor seemed happy that he still had hope.

He cannot keep track of the days. After each day is done, I put a x on the calendar. He spends alot of time looking at the calendar.

I have some calls I have to make on Monday. I am feeling calm now. I know I will find a way and now is the time to enlist home health services. I need more help. It is time. I have been waiting for the right time to call in the troops.

I have made a decision, I will do what I want from now on. He is going to complain and not like it. I will tell him that I understand and leave it at that.

I will have a hard time bathing him. I suppose I will have to use the bathtub and put him in there. I will have to dress him. I will have to feed him. I will have to help him go to the bathroom. And later on when he is bedbound I will have to use adult diapers.

He is fading so fast right now. It is happening so fast it takes my breath away. I try to let him do for himself as much as possible. I think he cannot use the remote on the tv anymore. He wakes me up every morning now.

I will be grateful for the people who do assisted living. I sure hope I can afford that. He seems ready for that. Today I got the mail and took care of the diability check. He will forget how to write his name.

I am changing on the inside. I am getting tougher. I have no patience for his complaints. The fact that he does not want me to be cheerful is hard because I have been doing it for so long. I do not know what he does not like about it.


we still have to do our taxes. I do not know what Iwill do when he is unable to talk anymore. I cannot imagine how he feels or what he thinks. I feel sick about the whole thing.

He is fading so fast. I will be in control of everything. He wants to eat the same things every night. It is so hard because he is an adult and not a child that I have control over.

He is fading so fast. I notice the slipping away more and more each day. I am glad he can still do self care. I am sad that he rejected a cane or a walker. It will take him having a hard fall and needing medical assistance to convince him to use the.

There will be a time when he will have to be in a wheelchair. That will be hard on me.

I hope his brother and his wife calls me to let me know what they have found out. It will be strange to have strangers around to help to take care of him. Perhaps I will learn new ways of being.

I did not go through this with his mom because when she was placed she was bed bound and she was dying. They brought her back to life by feeding her. But she was bedbound and we did not understand what she was saying.

He is on his way to being bed bound. I do not know how long I have before this happens. I am learning how to let go.

I sure want a cigarette. I bought myself some wine today. I did not get drunk. I will not drive while I am drinking. I will not have the kids while Iam drinking. It helps me to relax.

Well tommorow is another day. I expect to watch the superbowl alone. He sleep all of the time during the day. He has not interests. He does not do things as projects for him anymore.

He can still call the bank and get the balance. It is something he does. He does it several times a day. I try to not be over helpful anymore. I still have to watch him and ask him what he is doing.

I do nto know if he will have delusions tommorow. I will have to wait and see. He is completely unemotional.

I am so grateful to the supporters here because I have been applying some of their principles and it has been helping.

He has become a stranger to me. He is fading fast. He is so out of it. I get lonely and I suspect that will change when I get someone to come in.

I will have to think of things to do when I get out of here during the day. I feel sad but strong and determined to take the best care of him that I can. I hope he will not quit speaking soon.

I did some research on end stages of lewey body dementia. It is very ugly and insidious. I will need alot of help and support from my family.

I have been waiting until he is incapacitated and he is there now. It is time to enlist the help of those others that have been trained. He has been spoiled very badly. He is so dependent on me.

I wonder what tommorow will bring. I can only deal with it a day at a time.

I will have to think of things I can do when I go out. I will have to do this every single day. My allergies are acting up. I took the medication but it is not working.

My health must be good. I need to join a gym and get a trainer to lose the weight. I will have to become more independent. There is a gym really close by. I belonged to a gym before. But I lived so far away from it. I do not now.

I do not have to do it tommorow. When his brother comes down mabe I will join the gym then. I will have to place my husband but it iss so expensive. It cost four thousand a month to take care of his mom.

He is so afraid of losing the money. At least today he did not talk about being placed in a home. He sure did not want to go to a hospital. I was glad when my psych doc told him that I did not have dementia. My husband talks fo mean to me but he puts on a happy face for others. He has always been so good at doing this.

Some of what he does and says reminds me of when He was abusive. But at least he is trying. He does not want to fight so i am grateful for that.

It sure helps to get it out of me. Today was a ok day. He was more in his rightmind. I am grateful for that.

I have to get tough on the inside when he says mean and cruel things to me. It is so easy to say I understand and it works like magic. Something so easy and simple to do.

I had a dream last night. I almost remember it. It was about a married couple taking care of endangered species of bugs and reptiles. I was learning about what it took to take care of them. I do not like bugs and reptiles.

I remember in the dream I got some on me. There was other people in the dream people I had problems with and i was trying to talk to them but they were not being very talkative to me. Life was passing me by. That was my dream.

Probably has to do with what is going on in my life now.

 

[71nothing]

((((Gizmo)))) I'm so sorry you are going through this. I know with my mom it's often as if she has regressed to toddlerhood. It's all about her and her needs and she has lost the ability to empathize with others. On top of that she has lost what we call her filter (meaning she says what is on her mind without thinking of the consequences).

In so sorry you are basically the only caregiver. It's so stressful to deal with this disease (Parkinson's with Lewey body dementia) and have your own PTSD to cope with as well. Just know you are in my thoughts. Not sure there is anything more than that I can do for you but I am thinking about you!

I hope some of the family support you've reached out to comes through for you.

 

[Abstract]

Hi Gizmo,

I think you are on the right track. You are coming to terms with the reality and making plans. It is hard but you are a strong woman and you can do this. Anyone in your situation would find this extremely difficult.

I once saw a brain dissected of someone who had had alzeimers and it was shocking. There really was very little left there. I don't want to exaggerate but it almost seemed about 15 % was left and it looked totally different in every way. His brain is deteriorating and that has to enormously affect how he functions, thinks and behaves.

I have heard what is most distressing for them is the awareness that they are not functioning properly. So when you say you understand it probably reassures him and he doesn't feel so crazy and therefore feels less distressed. Which makes it easier for you too. I imagine anything that helps him feel useful, functional and less delusional will help calm him. And everything that reminds him that he is loosing his mind literally is likely to be very distressing and have him act up more.

I also heard (what 71 said) that they loose their inhibitions or filter. So when their normal personality would have filtered out certain things before they speak they are now unable to do so. I especially imagine that is relevant if someone is naturally controlling and has learned to reign it in.

I don't know about the cheerfulness issue but maybe he thinks it is false cheerful whether that is true or not. Or maybe he feels there is nothing to be cheerful about. I think you do have a right to express yourself authentically though and you don't have to suppress the moments of joy or happiness you have in your life. You have a right to them.

I am glad you are making plans to take care of your needs. You need to do that. I hope you get all the support you need.