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Topic Dad w/PD & mother w/ Lewy Body Disease Go to previous topic Go to next topic Go to higher level

By number1daughter On 2007.12.12 19:01
I am new here. I have been reading the posts and find them very helpful.
Both my parents are in bad shape. Neither can walk without a walker. I know things will get a lot worse.
I am wondering how I will hold up under this as I am filled with anger, resentment, feel I have been cheated out of my *GOOD* years. I feel guilt and am ashamed of these feelings. I know this may go on for years....How do all of you cope?

By kuttlewis On 2007.12.12 19:13
One minute or hour or day at a time.

By Pearly4 On 2007.12.13 05:46
And leaning on each other for understanding and support.

It's hard, truly hard, and as others have said in other posts, as much as you wish it would end, when the end comes you wish it wouldn't! It's childhood in reverse - you always have improvement coming with a baby - the baby grows and learns. With our charges, it worsens. They lose something almost every day.

But we continue on and do the best we can and have our regrets and our hopes and continue to pray.

By number1daughter On 2007.12.13 14:47
Thank you all for your support.

I would guess my dad is in the last stage of PD, or maybe the next to last stage. How can you be sure of what stage they are in? He is just starting the Depends stage, but has had to wear a pad for a long time now. He needs assistance some mornings to even get out of bed. He still feeds himself but has a spell that comes over him at the end of a meal sometimes. You can hear a noise and a lot of what he ate comes up. Does anyone have comments on that sort of thing?

Mother w/Lewy Body Dementia w/Parkonsonism has to be helped with everything. She can barely walk, can't get in or out of bed without assistance, has to have help to go to the bathroom...has hallucinations and delusions....can't take PD drugs because of LBD and vice versa. LBD is a nightmare....

I guess I sound like I am feeling sorry for myself. I am usually a cheerful and upbeat person, but this does have me down...

By grazia On 2007.12.13 16:35
hi, I have been a daughter as you are now, or better an only daughter, I have cared about my father for a longtime. He too had PD and LBD in the last stages, though never diagnosed ( lbd ). When he started to show symptoms of the illness, I had lost my mother some months before. There s no need to say how I have been feeling from the start and during all those long ( and now in perspective short ) years. As you , I have spent my good years, trying to help my father, fighting with him against PD, crying, suffering inside my heart, renouncing to many things. Last year he died. I dont have much advise to give you, its not easy to tell you about stages and so on, everything depends alot on each single person. I can tell you to get informed on meds, consulting a good neurologist and trying to avoid all those medications which dont have any more effect after many years...Also attend this forum, people here know exactly how you feel and they can provide you useful information, and often they give you comfort and affection. Last thing: love your parents as much as you can. I know that in this stage where they are, they sometimes cannot even appreciate anymore your efforts, but one day you will probably find a great comfort knowing that you have been a caring daughter. I send you a big hug, keep on posting, it will help you....

By Pick On 2007.12.14 09:23
Hi number1daugther,

Has your dad ever been evaluated by a Speech Therapist or had a swallow test? I was surprised by how many things Speech Therapists cover that aren't directly related to speech. Swallowing food, chewing, etc. are among them. They can also provide exercises and techniques to prevent choking (a significant risk in late stage PD) and help make eating food easier. Medicare/Medicaid should cover it.

I hope you and your parents are getting all the benefits you are entitled to via Medicare/Medicaid. I can't imagine how you're coping with that much on your plate if you're doing it entirely on your own. My dad is at about the stage your mom is, and I know I can't do it alone.

I know all too well the feelings of resentment, anger and guilt. For almost a year now I've been trying to escape (that's really what it feels like) my dad's extremely exaggerated sense of entitlement and what he feels I "owe" him. He doesn't even think I deserve breakfast or a good night's sleep much less a career or social life. Today is an especially bad day and I can't even really talk about it, but please keep checking back on our little forum here. There *are* others like you out here and we do "get it."

By number1daughter On 2007.12.14 13:34
Thank you for your response Pick. It helps so much to know my feelings are felt by others ( funny way to put it ).
Last evening at dinner daddy had another episode where most of what he ate came up. He makes a little noise and I know what will happen. Is this a normal part of PD?
He has not been to a speech therapist. Maybe I will have to look into that. I am so afraid he will aspirate.

I do have some help with my parents. My husband helps me so much. Thank God!
I have a brother that helps some. It seems our lives revolve around them and I know the hardest part is yet to come.
I need to start home health or Hospice soon. Needless to say neither one wants either one, but they will have to accept it.

I am not a good nurse, I admit it. I am doing the best I can and surprise myself some days with what I CAN do.

Mother is not incontinent yet, but she can't remember how to use the toilet. She worries constantly about it and wants me to go over and over it with her. She asks " Let's do a dry run." and will do it as many times a day as she can get one of us to do it with her. Needless to say it takes quite a bit of time each trip. She has to have someone take her to the bathroom day and night. At night we just about have to bodily get her in there. Her urologist has given her an anticholinergic bladder medication, but I don't give it to her because she gets more confused. I have read that LBD patients should not take anticholinergics, although I wish she could take it as it does help her constant urge to go to the bathroom.
Thanks again.

By Pick On 2007.12.14 17:44
I would not be surprised to hear that anticholinergics are contraindicated for LBD. I know that they can adversely affect cognition and for that reason my dad had to stop taking them. He now takes Enablex for incontinence.

Have you reported these eating episodes to your dad's primary care or neuro? If not, I urge you to do so. Aspiration is something many parkies have to worry about. I can't tell from your description whether your dad is actually regurgitating food or spitting it out. My dad used to spit out his food before he worked with a speech therapist. If your dad is swallowing his food first and *then* it comes up, then that's something I'm not familiar with in PD (but doesn't mean it doesn't happen).

I'm really glad to hear you have some help although it never seems like there's ever enough does it. From what I've found it is relatively easy to get Medicare to pay, at least for awhile, for aids to come to the house and assist with bathing and dressing. I'd ask your mom's GP about it, and also ask if Medicare would pay for a visiting nurse or PT to perform a home evaluation. It sounds like your mom might qualify as "homebound" which as I understand it entitles her to many benefits such as in-home PT, health aids, etc.

Keep in touch and good luck!

By number1daughter On 2007.12.14 19:04
Tonight at dinner it happened again. It came back up. He actually swallows and it comes back up. I need to find out what is happening.

May I wish everyone in this forum a Merry Christmas and a Happy new Year!
God bless all.....

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