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Topic Dad update...such a hard time Go to previous topic Go to next topic Go to higher level

By worriedaboutdad On 2010.10.15 14:04
Hello to all! I hope this finds you and your loved ones well. It is such a beautiful time of year and even on the worst days it seems that looking outside helps at least for a moment. So....with much sadness, we have placed Daddy in a Memory care facility. He needs round the clock skilled care which none of us can provide. It has been so difficult. He was angry at first and doing all the typical things (refusing to eat or take meds etc) but seems to have settled in a bit. For the most part his memory is good. His judgement and logic however is not. He believes whole heartedly that he can go home and do just as he pleases with no help. Of course, i understand most of that is wishing. Anyway, my concern/question is about his swallowing. Daddy's drooling and saliva amount has increased so much. The staff is pureeing (sp?) his food and he basically drinks it. Should we let him use a straw? Also, will he likely begin to aspirate (I think that is the right term)? I know this sounds bad, but I know that right now he wants to die and I guess I almost wish it could be sooner than later. Please know that I love him with all my heart but just hate to see him linger on this way. Thanks!

By Mary On 2010.10.15 15:16
I haven't posted in a while but have been checking in from time to time. Your post however reached out to me. It is heartbreaking to put your father in a care facility. I had to do the same with mine. He too felt he did not belong there and wasn't like "the rest of them." Honestly, he was worse than most. He was mad at me and told me that if I couldn't bother with him any more to put him in an apartment. He said it is okay if it takes him all day to dress because he has all day. Just so heartbreaking to have Dad talk to me this way. He too needed 24/7 care and I was exhausted to the bone trying to keep up with his care, my job, the kids, housework, etc. I truly feel for you. It has been over a year since we brought Dad to the Veterans Home and I still remember that day like it was yesterday. I knew he was exhausted, scared, confused, etc., and yet I had to leave him. I worried they wouldn't understand him or know what he likes. Well, they took absolutely wonderful care of him. Dad told me that they do take good care of him but he'd rather be home with me. Anyway, as far as a straw, Dad was not allowed one and his liquids were all thickened to avoid aspiration. His food was pureed as well and looked yukky. What you have described was the last phase of this awful disease for my Dad. He only lived 6 weeks after being put in the Veterans Home. Now, as you have heard often, no two are alike. But you could be describing my Dad last year. If you haven't done so already, I recommend reading the book Final Gifts. Watching our loved ones struggle and fight this disease until all their fight is gone is beyond difficult and heartbreaking for us. Can you imagine what they must feel? I once read on this form "my Dad did all of the work, I just held his hand and loved him through the storm."
Hugs and blessings to you, Mary

By worriedaboutdad On 2010.10.15 16:44
Your reply brought tears to my eyes. Thank you so much for taking the time to respond. Is it wrong for me to in some ways hope he is in his last days/weeks? I just hate to see him like this. I'm not sure if this appropriate for the board but I have a strong faith in God and believe with all my heart that when Daddy passes he will be free from this disease forever and in a happy place. That is what I want for him.....to be free. His walking is much worse than even a month ago. His drooling is excessive. They do make sure his food is somewhat thick and not pure liquid. he also has to take his pills crushed and in ice cream. I noticed yesterday that I could hear him breathing....not exactly wheezing but maybe slightly labored. I think bring up the straw with the nurse and see what she thinks about that. Again, it is so nice of you to reply. Just not being alone in this is a great blessing.

By Mary On 2010.10.18 12:27
worriedaboutdad, this last phase is very hard, almost unbearable. You are torn between seeing your Dad has no quality of life and being without your Dad. You are truly in the place I was last year at this time. My heart breaks for you. I wish I could give you a hug and be there by your side. My faith is also strong. It is what got me through the loss. I know Dad is finally pain free and dancing in heaven with my mother. We hang in there because we have no other choice. If you wish to ever email me directly, please feel free to do so at schuhmary@yahoo.com. I will pray for you during this difficult time. Hugs and blessings, Mary

By susger8 On 2010.10.19 08:02
My dad uses straws even though his swallowing is not bad. I would check if they could use straws.

I share these feelings. My poor dad has no quality of life -- he really can't do anything but sleep. He is healthy aside from the PD, and his mother lived to be 102, so he could be around a long time yet. But what kind of life is this? I struggle with feeling guilty for thinking these things.

Sue

By colettem On 2010.10.19 22:13
Sue and all,
I share the same feelings. My mom went into a nursing facility over 4 years ago and we thought she had only a short time to live. But she is still with us. The nursing home staff are great with her but I struggle with her quality of life issues as well. She mostly sleeps or is in "off" mode. But at this point, after 4 years, she doesn't seem bothered by her situation. It's been a long road, with lots of adjusting. I appreciate everyone's honesty about all the conflicting feelings. Helps to know others struggle with the same thoughts.

By Cindy Bystricky On 2010.10.21 14:20
Ya'll must be reading my mind!! I have been having a hard time deciding should I continue to wake my husband up , dress him, beg and plead for him to eat, try to do "exercise"(he cannot walk) give him meds every 2 hours(sinemet) and then end up watching the poor guy sleep in his chair,drooling everywhere, all slumped over. All he wants to do is sleep. Not a medicated sleep, just excessively tired and sleepy. (17yrs.of PD) He has been having little seizures and not eating nearly enough. I feel like if I just let him sleep, I am "letting" him die!!!! Well, guilt has kept me going and going until I am worn out! I was going to call our pastor and ask him what he thought. (I have also cared for both in-laws through the years with hospice at the end) Before I could call, our pastor showed up. He reminded me of my in-laws, sweet people, 95 and 102 years old. He said, "You didn't have a problem with them, you have to do the same with Al." He is right! From now on I will let Al sleep if he wants to sleep, eat if he wants to eat, and just keep him clean and comfortable. We have to let go. Al is only 71 years old, not 95 or 102 like his parents, that is why I thought I had to fight this all the time! But Al is SO tired of fighting, SO tired of PD! He has dementia so he really doesn't realize how badly he has declined, thankfully. I want to make him happy, not fuss with him and upset him. Like the pastor said, "He doesn't need food for where he is going!". God will provide all his needs.....God bless all of you!


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