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By worriedaboutdad On 2010.04.11 18:54
I have posted a few times about my Dad. Things are just getting worse. On Friday night, Daddy went out on the farm as usual. He stayed out way past dark which we have asked him not to do. Anyway, he fell. He crawled on the ground ALL NIGHT LONG trying to get somewhere to pull himself up. He finally got to a rock and got up. When he got to the house it was 5:00 A.M. He called my sister because he had lost his keys and couldn't get in. She called my brother who went to him right away. He was SO UPSET and rightly so. He cried and said he would never do that again. Of course we asked why he didn't call us in the night and he didn't seem to know. We all try very hard to keep tabs on him to make sure he is in the house at night etc, but apparently we failed on Friday. This probably sounds bad, but we all have kids and we get busy sometimes and also he is so independent (or wants to be). I feel just awful. He seemed somewhat disoriented after this but he hadn't hit his head or anything. Probably exhaustion. He refused to go to bed, so he basically stayed up for two days. The bright spot we thought was that at least maybe he would start to come in before dark. No. last night when we checked on him way past dark, he was not in yet. I am so torn between wanting him to have his independence and yet wanting to protect him.

By caregivermary On 2010.04.11 20:55

If possible, read my post of just a few days ago titled Letting go of my father by Jonathan Rauch. You will need to go to the website to read the article. I believe it will help you a lot.

By worriedaboutdad On 2010.04.11 22:19
Thank you caregivermary. It couldn't have been more appropriate. I think right now I am struggling with guilt. However, I can't take every step with him. Watching him cry because he is so frustrated breaks my heart and then that sadness almost turns into anger when he refuses to make changes to his lifestyle. I know I should be more understanding. We lost our mother last year to cancer. From April until August, we took shifts spending 24 hours there with her. We have barely had time to get over it and here we go again. Even typing this makes me feel so guilty and unappreciative. Like I am complaining. I'm not exactly complaining, it just comes from not knowing what to do. I don't even think my posts make good sense because I just ramble on as thoughts come.

By caregivermary On 2010.04.12 10:46

Please don't feel bad about communicating on this board in any fashion you need to handle all of this. Believe me, we are all in the same boat and all of us from time to time complain, moan, scream, cry, hurt, etc. using this outlet.

The not knowing what to do is the most difficult part. We all understand. Keep posting here and everyone will help with whatever issue you have. It is a tough journey and especially after going through the end of you Mom's life most recently.

I don't think your Dad needs to be on his own right now. I'm sure that is obvious to you and the rest of the family. It might be time for a family conference. What to do depends on the family financial situation as well as the interest and availability of someone in the family to provide the one-on-one care that will be needed. Hired home care is also an option as well as assisted living and nursing home.

Taking some control at this point may be better than waiting until????.......

Take care and keep posting

By susger8 On 2010.04.12 10:57
Oh, what an ordeal. I'm glad that he is okay.

One thing to keep in mind is that even if you get him to agree to (for instance) stay inside at night, he may forget later. He may have really good intentions when he agrees, but it might not stay in his mind. Someone who has problems like this shouldn't be on their own. I've been there...Several years ago, my dad agreed not to drive after dark, because his night vision was getting bad, but on Halloween night I got a call that he'd had an accident. He knew he wasn't supposed to drive after dark, and he couldn't explain or remember why he did it.


By lvmymom On 2010.04.12 13:29
Be strong for your dad ... Try not to feel guilty about moving him to a facility that can watch over him and make all your lives more secure.

I didn't feel guilty about conveniencing my parents to move to an assited living quarters. I figured it was the right thing to do. It is a long process.

First, I merely took them around to visit different facilities near my home. They didn't want to move. My dad was exactly like your dad and my mom wasn't much better. We'd make it easy on ourselves. My mom and I would visit two and go to lunch to discuss them. Made a fun day out of it. Then a couple of weeks later we'd visit two more. Once we found a facility they both liked we realized we'd have to put our names on a waiting list. It all takes time. This is a good thing!

After lots of struggles to get them to even think about moving the slow steps help.... First "looking" (kind of got them thinking that direction without commitment.) Then "finding" a great place (got them involved and part of the decision making), and then the "waiting" lists (gave them time to adjust to the new future ahead). It became important to them to get on that list. They were committed to it (kind of).

So then we told family and friends they would be selling their house/farm eventually, there was an offer before we even put it on the market. The buyers were willing to wait till we got the "call". We got the call, moved them into the facility right away, called Salvation Army and sold their house. That went fast. No time to dilly dally...

The money they made selling their place is what pays for their stay at the assisited living facility. It is rather expensive. Be prepared for that.

They didn't want to go and it is the best thing in the world now. After finding their comfort - it is not immediate, they made the best of it and now it is "home".

My father actually has passed away now and my mom's PD has progessed and she is content and well cared for. They moved there 4 years ago. No guilt, only thankfulness. My mom's facility is two blocks from my house.

Good luck with your dad. Take it slow. It is a slow process to find the prefect spot ... it is not an overnight decision. Once he realizes his life isn't going to change immediately, he'll be more open to the "process" ... remind him that he is a strong wise man and it is time to be pro-active... PLAN now for the steps ahead. This slow forward motion will be good for both of you.

Good luck - you are a wonderful daughter and you have help with your brothers. You and your dad are lucky. Cherish the love, be strong for you dad.

By lostdaughter On 2010.04.12 17:03
As you've already been told, PLEASE don't feel guilty about sharing your feelings here. The emotional aspect of caring for a parent with PD is the most difficult, I think. I constantly worried about my mom breaking something or busting her head AGAIN and she would always say she couldn't sit in a chair and do nothing. The loss of independence is very hard and I always felt my mom thought she would "get better" if she did as much as possible.

Come to this site to vent and share whatever is heavy on your heart. The advice may not fit your situation but the outpouring of understanding and sympathy will help YOU. I can guarantee that.

By Mary On 2010.04.12 18:04
worriedaboutdad, well, I'll say it again, "don't feel guilty." However, when I was caring for my Dad, I felt like "guilt" was my middle name, like "caregiver" and "guilt" were one word. So I've been in your shoes and STILL have guilt feelings. My Dad did not want to go in a nursing home even though doctors and nurses told me he needed 24 hour care, which I could not afford in my home. One night Dad fell out of bed and I did not hear him calling for me. I turned off the monitor because his nightmares were keeping me awake. He was exhausted when I found him. I still feel guilty for that night. Dad blamed me for taking away his independence and I just could not reason with him to see it was the disease that took it way, not me. No one wanted him to be independent more than me besides him. You are in a very difficult part of this journey. Hugs and blessings to you, Mary

By worriedaboutdad On 2010.04.12 22:43
Thank you all SO MUCH! When my mom was sick I relied on a similar forum for support. I have to say that sometimes that was the only place I felt like anyone really got it. Others try to understand, but they just don't unless they have lived it. I am thankful for this place to learn and vent!!

By colettem On 2010.04.13 09:40
Just to add to what lvmymom posted. I did something similar with an in home caregiver. I told mom, let's just see what they have to say. It made it more of an interview or assessment that we were conducting with mom in control. It turned out that mom and the caregiver started talking about food and mom was delighted to discover the caregiver had identical ways of preparing their favorite foods. They've been together ever since. I know it doesn't always turn out that way, but we were lucky.
And I'll add too, that I always come to this forum when I'm feeling guilty, which is often, and it always helps to know I'm not alone.

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