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miracleseeker

Loss of confidence

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Dear CG's

 

Do you have bouts of insecurity  to care for your loved ones?  How do you handle that if you do?   We all know Pwp's condition will worse over time.  How do you find the inner strength to keep going?  Doing it alone is so hard and lonely.

 

 

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I am always doubting my ability if I am doing the right thing. I have been told by my doctor, nurses when DH was in the hospital and by his neurologist that I had to have been a nurse, as I was so very knowledgeable about PD. Well this sure helps to hear it, but I still get very worried and stressed. I am lucky however, now that DH is entering the beginning of stage 5 to have family and friends that I can call on a short notice when I need extra help or just want to get the heck out of the house. I never thought I was a strong person, but found out I am more so than i thought. 

 

I do take a stress medication daily, and when things get extremely bad I step outside and walk or sit quiet until I calm down. The most difficult thing for me is to not show that I am upset, whatever. Also found I must be a good actor.

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I got tired of acting like I'm super woman.  My sister was staying with us for the past week while mom was recovering from a bad UTI.  She lost all strength on her legs and I could not transfer her one bit.  I was terrified to be alone with her and had to ask for help from my neighbors that I'm not that close to while I waited for my sister to get here by plane.  I felt so alone and my anxiety went through the roof.  Well... my sister has her active life so she just left to go back to her own world and I am once again doing everything for mom to the best of my ability.  

 

The one thing that scares the heck out of me is when I cannot lift her or if she is on the ground.   I had a thread on asking how to lift someone off the floor when you are doing it alone and it's been seen thousands of times but I don't think anyone really has a solution.  I can change her diaper 10 times a day and feed her and walk her but when it's something that requires Hercules to handle then I'm just a useless baby. 

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I have to change his depends, help him to the bathroom, dress him sometimes three or four times a day. He has this thing that he completely undresses himself to go to the bathroom, but cannot dress himself again so I have to run and do it. He can still feed himself, but have to cut everything up real real small so that takes times, and usually my food is cold by the time I get to it. 

 

He has fallen several times and twice I have called 911, and they either send the Sheriff out or a ambulance. Other times I have two male friends that do not live far and have to call them. I cannot help him either when he falls on the floor. A couple of times he was able to untangle himself and crawl and was able to pull himself up. I can lift him up from a chair or off the bed ok. He now has a Lift Chair in the living room where he spends most of his time and that sure helps. 

 

It is a struggle for sure being a Caretaker. At the end of the day I am physically and mentally exhausted. This is my quiet time right now, I have him in bed, and I spend at least a hour before I go. Lets me relax, and pray that tomorrow will be a good as can be day. I wish you the best and like my doctor tells me... take care of yourself first so you can take care of you husband. I try but it is a challenge. 

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You know exactly what I'm going through.  People like us should win the lottery huh?  :-P

I sure do miracleseeker. We should win something lol, we sure do not get the thanks or credit we should. Because if it was not for us, most or alot of the people with PD would be even worse off. I speak only for my DH, if it was not for me he would have been in a Nursing Home long ago, and that is one place I will and am happy to do everything in my power to keep him out of.

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Right on!!!   Oh and thanks for the visual of your DH going to the bathroom.  That was worth a chuckle.  It always amazes me when they can only do something halfway.  years ago my mom could pick up the phone when it was ringing but could never hang it up properly when she was done.  It was always a one shot deal.  I only called her from work when I had something that couldn't wait because I knew I could never reach her by phone again that day.

 

My sister wants mom in a home.   My mom has 4 kids and this is the thanks she gets after everything she sacrificed for us.   I don't know why she insists that they are like club med. I guess she will find out one day when her kids send her there probably kicking and screaming.

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I come with a dual perspective.  Sorrow and remembrance, and fear of the future.  I spent weeks and weekends with my mother for a few years.  I have no kids, so other family members 'knew' they were busier, less flexible than I.  Okay, to a certain extent that was true.  I had no teenagers and college students.  Still, not much I could do other than spend a lot of money on airfare everytime I had a 3 day weekend, or break in the academic calendar.

 

My fears for the future are different.  My DH is a large man, my mother was quite small.  I am average size.  I think the physical doesn't scare me as much as the mental.  Miracleseeker, you need help.  I know you won't get much from family members, try to accept that and let it go.  I say that because worrying about that, and playing it over and over in your mind is a drain on your reserves and will only make you feel more helpless and alone.  Start with the practical, that's what I do when I feel overwhelmed.  Call the PDF helpline, and see what resources are available for a houyer lift.  800.457.6676.  They may also have suggestions for mental health resources for you in your area.  Use them.  This is a terrible job, a lonely job, a stressful job.  If you have another place to talk to someone face to face, the impossible and heartbreaking becomes a little more bearable.  Be well.

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Yep the single or childless kids do most of the grunt work cause we seem to have more time than the others.  Quiet -  the ability to lift is more important to me than the loss of her mental functions since that left years ago for my mom.   I can do it all and I never complained because I wanted to do it and could.  The heavy lifting is what stops me in my tracks when she becomes dead weight.   Hoyer lift was discussed before and it's way too big to fit in any room of my place.  I have a helper that watches my mom when I'm at work so that gives me a break so when I get home I'm ready to handle my mom the rest of the time.  My helper is a big woman who doesn't have a problem lifting my mom.  I envy that.   Right now because my mom is still weak from healing from the UTI that is harder to get her moving around.  When I have too much time to think that's what happens.  My brain never stops.  I do have people I can talk to in person but it's just easier to go on the forum and vent and have you good folks listen and understand what I'm going through.  Thanks everyone.  I think I am going to buy some hand weights to strengthen my arms.

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Since we are still so new to this I must admit to having lots of insecurities. I am just still trying to deal with all the medical issues DH is having, and all the new medications, therapy, keeping up with appointments etc. to think too much about the future. It's there, and my head is not in the sand, but just don't want to hit overload.

 

For whatever reason, we have had the best week since all this surfaced. He is more alert, with a Carb/Levo dosing adjustment tremors are much improved, and just grateful for that.  

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I got tired of acting like I'm super woman.  My sister was staying with us for the past week while mom was recovering from a bad UTI.  She lost all strength on her legs and I could not transfer her one bit.  I was terrified to be alone with her and had to ask for help from my neighbors that I'm not that close to while I waited for my sister to get here by plane.  I felt so alone and my anxiety went through the roof.  Well... my sister has her active life so she just left to go back to her own world and I am once again doing everything for mom to the best of my ability.  

 

The one thing that scares the heck out of me is when I cannot lift her or if she is on the ground.   I had a thread on asking how to lift someone off the floor when you are doing it alone and it's been seen thousands of times but I don't think anyone really has a solution.  I can change her diaper 10 times a day and feed her and walk her but when it's something that requires Hercules to handle then I'm just a useless baby.

 

Most fire departments have what is called lift assist. At no cost they will send someone to lift your mother. Call your fire department to see if that service is available. I have used it once when I couldn't get my DH up myself. It gives me peace of mind to know that service is available.

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Thanks Genden I remembered you mentioned that before.  Geez I'm so scared of creating attention so I rather quietly knock on a neighbor's door for help.  Unfortunately I'm not talking about the accidental trip to the floor but what if her legs just give up?  That's where my fear lies.

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Thanks Genden I remembered you mentioned that before.  Geez I'm so scared of creating attention so I rather quietly knock on a neighbor's door for help.  Unfortunately I'm not talking about the accidental trip to the floor but what if her legs just give up?  That's where my fear lies.

I know the feeling. One of my DH falls was in the bathroom, his legs just left him and down he went. His legs were all twisted and he could not straighten them. Our bathroom is very small I tried to help him but could not, I just made it worse. I had to call his son and a friend that just lives up the road. It took two of them to finally him back to the bedroom. If it would not have been for them I would have to call 911. Which I have had to do twice. So I know your fears.

 

Because the EMT and Sheriff Department keeps track on how many times they have to come to rescue, if it is to many times the Social Workers come in and that could mean removing DH from the home. So this is my fear. That I will continue to have the help I do now where I do not have to depend on the other. 

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You don't have to worry since you do have help from relatives.  I'm always one step away from one big tumble.  If I keep complaining to my sister about how hard it is to do it alone it will just make her more eager to send mom away rather than try and come more often to do her part.  I never get my point across to her and it's just so disappointing.  My helper only works weekdays and she's got a social calendar like Paris Hilton so if do call her for an assist it would take hours before she can get to me. This is why it's so important to have family live close by.   What I wouldn't give to have that.

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I am lucky I know. This is our second marriage and DH has three children all grown of course. His youngest son does help on weekends but works during the week, his oldest son we have no clue where he is have not seen him for over 15 years and his daughter who does not live that far never calls her dad, only comes at Christmas. Has her head in the sand when it comes to her father. My children love him and do alot for me and him. For fact my son from Florida who is disabled himself came this summer just to do things that he could to help. So I have my battles with siblings on DH part. Sad when it seems to be on just one sibling to take on the responsibility. 

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Well they have no problems. As I mentioned my kids all love him as if he was their father. There father passed away six years ago and even before that they have always loved him. SO they all help out as much as they can and for them he is their father. 

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Well they have no problems. As I mentioned my kids all love him as if he was their father. There father passed away six years ago and even before that they have always loved him. SO they all help out as much as they can and for them he is their father. 

Only people who live this way would understand.  I tell my friends what happened to my mom recently with the infection and immediately they tell me to send her away so I can have my life back.  Really?  If their kids get really sick will they do the same?

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I have recently realized that MDH was somewhere on the Autism Spectrum as a child, but would not have been given parental, school and social support as he grew up in a poor area of London after WWII in the 1950's.  He therefore developed complex defense mechanisms - narcissism, verbal agility, physical strength, competitive, makes lists and more lists of everything and remembers them even if he has not written them down, caution with the truth (says people don't like it, so he lies to me a lot, or simply deliberately omits to inform me of many things).

 

He is fixated on sex and I find it quite traumatic at sixty something to find myself treated as a sex object by an old man whose reality fluctuates between 4 yrs (just wanting attention and safety) and 24 years (wanting to experience sex the same way he would have done at that age).  I met him when I was 40, so twenty years plus later, I am finding out all the things he did not tell me then, and filling missing bits into his personality tapestry, which I find very hard as I realized that I have been used/taken advantage of.

 

His grandson who is 4 yrs old and who is autistic, behaves exactly like him - which is how I realized he would also have been autistic too at that age.

 

I find I have become very fatigued and unmotivated and resistant and now long for a few months of DH free space - together with this I know my confidence is low, as I feel I have lost the reality battle of my own self-care.  He and his daughters are also all missing his late wife a lot, but are not respectful to me in how they deal with this. Another confidence challenge.....

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jillianD - You are in a very tough situation.  I'm torn fighting my family over the care of my mom who I love the most in the world but you are caring for the devil and I just don't know how you deal with that.  I can only pray that we all make it through with enough stamina and strength and everything works out for us in the end. 

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I have recently realized that MDH was somewhere on the Autism Spectrum as a child, but would not have been given parental, school and social support as he grew up in a poor area of London after WWII in the 1950's. He therefore developed complex defense mechanisms - narcissism, verbal agility, physical strength, competitive, makes lists and more lists of everything and remembers them even if he has not written them down, caution with the truth (says people don't like it, so he lies to me a lot, or simply deliberately omits to inform me of many things).

 

He is fixated on sex and I find it quite traumatic at sixty something to find myself treated as a sex object by an old man whose reality fluctuates between 4 yrs (just wanting attention and safety) and 24 years (wanting to experience sex the same way he would have done at that age). I met him when I was 40, so twenty years plus later, I am finding out all the things he did not tell me then, and filling missing bits into his personality tapestry, which I find very hard as I realized that I have been used/taken advantage of.

 

His grandson who is 4 yrs old and who is autistic, behaves exactly like him - which is how I realized he would also have been autistic too at that age.

 

I find I have become very fatigued and unmotivated and resistant and now long for a few months of DH free space - together with this I know my confidence is low, as I feel I have lost the reality battle of my own self-care. He and his daughters are also all missing his late wife a lot, but are not respectful to me in how they deal with this. Another confidence challenge.....

Your situation is heartbreaking. Can you leave him in the care of his daughters and take two weeks to a month away somewhere? You need to take care of yourself and have some space to make decisions. One other thing. Speak to his doctor. Sex fixation is a common side effect of some of the Parkinson's medications. A medication adjustment might fix that problem. Edited by genden69

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JillianD, I may be totally full of sh$t but that sounds like a really abusive situation. From him and from his children. I'm not talking about the sex part- I truly believe that could be the side effect from the meds. It really sounds like that. I'm talking about all the other stuff you described. The lies, combativeness, etc from DH and the stuff from the children, especially the way they are dealing with the death of their mother around you. I wish you all the best and hope you are able to get away a bit. And if you decide you have to completely walk away I hope you can realize that that might be the most courageous thing anyone has ever done. But if I'm way off base, I still wish for you that you can get some respite and support as you deal with the difficult situation.

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I ended up divorcing due to his behavior. Think he had character issues all along. I am 8 yrs younger and an RN, he was a MD. He cheated our entire 37 yr marriage and became a regular at massage parlors. This began long before his dx, so I cannot blame it on PD. He was also dx a few yrs after PD with bipolar. The PD meds and bipolar meds fight each other. We went to therapy and it became clear that I was the only one working on the marriage. Had he been a decent man, he'd have a live-in RN who would've been happy to care for him but he chose a different path many yrs ago. It took much therapy to not feel guilt over leaving but I can honestly say it was one of the best decisions I have made. It was also fully family supported. Sorry for the long explanation, but I do feel abuse is not to be tolerated, sick or not. I wish you well in whatever you decide. Please care for yourself.

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