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By ultraj On 2017.10.15 08:21
Hi Everyone - My husband has had PD for the last 15 years, but has only gotten bad over the last 1 1/2 years. He is still responsive to the CL and is going to have DBS surgery in January. I am hoping that this gives him some symptom relief and me a break! At this point, I am basically a prisoner in my home. He does not like me leaving him for too long, so I am restricted to grocery store and CVS trips for the most part. He does not want to hire any help as he says we can't afford it (which I think we could, at least some) and he thinks that no one could take care of his requests the way I do. I can't get any time to myself with running around trying to keep him comfortable, taking care of our pets, and attempting to keep the house from looking like a disaster area. I have given up all outside activities except one and I can't make any plans or appointments, because most of the time he gets anxious about my leaving and I end up cancelling. I have lunch once a month with a small group of women who also have husbands who are disabled and I have time to read a book 1-2 pages at a time in between taking care of him. I am severely sleep deprived and have no energy or desire to work on my crafting projects that used to be my "therapy". His short term memory is also shot which means I get short with him when I've repeated something a dozen times, then feel guilty about yelling at him. He is not mean to me and says that he is grateful for my help, but this only makes me feel even more guilty and makes me think that I am the worst person on the planet for complaining.
Sorry for the ramble, but I feel like I am slowing going crazy and I'm not sure how much longer I can keep this up without having a breakdown. He acknowledges that I am under some stress, but really doesn't understand how bad it is. I've also had to give up my therapist because I usually have to cancel the appointment at the last minute when he tells me his meds are not working. There is no family around to help and our only child has an abusive personality disorder which she takes out on me. When she is here on breaks from school and I disagree with her or tell her no to any of her financial requests (like, "can I take a trip to Paris, or will you buy me a new car because I don't like mine any more.") she trashes the house and sometimes slaps and kicks me, so there is no assistance from that end either. She also doesn't care that her father is ill and always says that "he will be dead in a few years anyway, so what's the difference." I am dreading the upcoming Thanksgiving break. After reading this through before hitting Send, I guess there is not much I can hope for with suggestions. It just feels good to get it written down and know that I am not the only one going through this experience!!!!

By Daybyday On 2017.10.15 14:27
Ultra, welcome to you. I can so identify with alot of your concerns. My husband has had PD for about 7 years and he is getting more and more agitated when I try to go do things. He comes with me sometimes to grocery shop but itís always easier if I do it alone. He also says itís okay if I go to lunch once in a while with a couple different friends that I see, but now even that seems to bother him more than it used to. I tell him that itís good for me to get out and he agrees but then when the time comes for me to leave he always makes somewhat negative comments. I go anyway; I do not want to be a prisoner. We also have no family close by, closest is one hour away. I feel terrible about the situation with your daughter. Wow...I will say a prayer for you. Also, my hubby is having the DBS Surgery in 2 weeks and I pray that it helps with his outlook on life as well as remove a couple of his tremors. Heíll be getting the very newest version so they have signed us up for two research projects. He is starting to get a little nervous but it will be a good thing to do. Hope I will be able to deal with his anxiety as it continues to build up. Please try to stay positive. I know that sounds so weak and cliche but sometimes thatís all we have to cling on to. There seem to be so few options for us spouses. One more thing...we were told recently he will need $6000 worth of work on his mouth ..... ouch.....and we are contributing towards his 95 yr old mothersí care about $1,100 a month so you never know what will come up. He is retired and on Medicare but I left my job to be home for him and I am on Obamacare which has been great but now it may go up. Praying it doesnít. Just try to keep soldiering on. If you could find a counselor to talk to that may help. Medicare would cover it and it would at least be an outlet for you. Just knowing we arenít alone with our issues helps a little. Thinking of you.

By lurkingforacure On 2017.10.16 12:07
Welcome also. Many of us have been on here for years, some are new, but we are all a source of strength and comfort to each other. Come often, post as much as you need, and know that you aren't alone in this journey even though at times you may feel like you are the only person in the universe dealing with all of this and you are scared to death you are losing your mind. You're not:)

I have to say, I got angry for you, reading that your daughter trashes your home and even hits you if she doesn't get her way. I don't know your situation details, but I do have kids, some at home still, and cannot imagine them trashing our home or hitting me, particularly when we caregivers have so much to deal with as it is. The first time that happened would be the last!

Can you sit your daughter down and have a calm but very frank talk about behavioral expectations and consequences for not meeting them? If you pay for her college tuition, room, food, car insurance, cell phone, any of that, those are items that you can easily stop paying for if she doesn't behave properly.

And....if your daughter is in college, she is old enough to get a job and pay for her own trip to Paris or wherever she wants to go, or buy herself another car if she doesn't "like" the one she has.

Your daughter may need some help learning to control herself when she doesn't get what she wants (and maybe she needs to re-evaluate how fortunate she already is to have what she does???). I feel so sorry for you in your situation. Maybe others with kids will chime in as well with some suggestions.

I would also offer that you have to get out of the house or take whatever break you need that works for you. Our kids have told me incredible stories of my husband being able to get up off the floor in seconds once I leave the room, when only moments before he was yelling for me to pick him up, lift him over to the recliner, etc. In your situation, perhaps you could explain to your husband that you have to have regular breaks, and you all can either hire help to sit with him while you are gone, or he can stay alone and you both make sure that he has his meds, water, food, cell phone, anything he needs right at hand for the short time you will be gone. Then go.

A respite stay can be lifesaving. If there is any way you can do that, it could make such a difference. I've posted here on the forum about a two week break our family got last spring when our neurologist referred my husband to in-patient rehab for two weeks. I think it might have been some of the best weeks of my life, seriously, I was that exhausted, depleted, and just out of gas physically and emotionally. I went to see my husband in the rehab facility while he was there of course, but the break our family got was a godsend and re-set me so that I could continue without having a breakdown.

What I have learned (the hard way) is that we really do need to take care of ourselves: we too need to shower, we also need to eat, etc. Don't wear yourself down to the point of having a breakdown: we are no good to our loved ones in the hospital.

I hope this is helpful, and that others will reply with more suggestions. Keep us posted on how you are doing:)

By Checkmate On 2017.10.16 20:54
I am really sorry that you are in this situation.
It must be so difficult not to have your daughters support. You have mentioned that your daughter has an abusive disorder. Is she on medications? Maybe you could suggest a visit to the doctor? You must look after yourself. Please take time out just for you it will seem selfish at first but do it anyway. Many caregivers have posted that they have personal workers help them, if this is an option for you then take it.
You have to put yourself first some of the time otherwise you will not be well enough to look after your husband. I know this is not easy as I struggle with this too but I'm getting better at it and you can too!
Lots of hugs.


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