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Old 09-24-2011, 11:28 AM   #16
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Re: I ***HATE*** This Disease!!!

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Originally Posted by TC08 View Post
Had dinner with my mom last night. She was going through alot of "what ifs" about my stepdad......worried that he's going to get to a state where they won't be able to keep him in the adult family home that he's in. I did my best to reassure her that I know the caregivers care very much about him, and I know they want to do all that they can to see him through to the very end.

I also told her about hospice and how that will be added care and assistance. I can be so *together* when I'm talking to her.....and then I come here and spill my guts! Love you guys!
I am sorry that your Mom is so worried. It is natural because you never know what is coming. I don't know about adult family home but I remembered when I called one of those homes asking for my FIL, they told me it is not meant for late stage of Alzheimer's who need 24 hours help.

Surely I hope the caregivers can help him a lot. However if he wanders out a lot or if he needs lots of 24 hours help, then home care is expensive in the adult home and a memory unit may be better. Hospice is the last step actually.

The thing I would hope for him is there would be only one move to memory unit if you do move him. Otherwise I hope the adult home can deal with him.

God bless,
Nina

 
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Old 09-24-2011, 12:26 PM   #17
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Re: I ***HATE*** This Disease!!!

Thanks Nina. We are very VERY lucky to have found the adult family home that we have my stepdad in. Of course, if he was "exit seeking" too terribly much, that would give them cause to release him. With that said, he's been doing some of that for awhile, and the owner tells me about it, but just in a lighthearted way.

Fortunately, in an ironic way, he has trouble walking, and he's not exit seeking too much. I cannot express my gratitude enough to the owners, who are also the hands on caregivers, of my stepdad. Although he regularly gets them up 2 to 3 times a night, they have chosen to keep him. We're going on a year and a half of him living there. I really do think we're going to be able to work it out to keep him there.

I understand about hospice. I also can see us getting to that stage and getting that extra help. I would absolutely hate to have to move him at this point. I have had some heart to heart talks with the owner, and she continually assures me that they want to keep him. Again - I feel very fortunate. Feel like we found the best of the best adult family home.

The house n-e-v-e-r smells.....all of the residents are always well groomed, dressed, looked after. After what we've been through - the locked ward at a skilled nursing facility - an assisted living facility where they ASSURED me they could take great care of my stepdad (NOT - it was a disaster - that was a horrible 6 months), I am just......so very glad that he is living where he is.

I have looked into everything in our area - and there isn't a better situation for him. In fact, the most expensive private pay facility in our area that is family owned was HORRID I toured it two years ago. The locked memory unit stunk to high heaven of urine, and there were lots of poor souls just wandering the halls.......and the caregivers looked like they could care less about the residents.

Believe me, I will do everything in my power to keep him where he is. For all the whining / venting I do on this board, I probably don't say enough how grateful I am for the great care he is getting. I know there are lots of folks who aren't as lucky..........

 
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Old 09-24-2011, 03:05 PM   #18
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Re: I ***HATE*** This Disease!!!

TC...whatever strength I have I attribute to my mother. (my dad was the sweet softee in the family. ) We used to tell them that that we got his heart and her strength.
I am constantly reminding myself that if my mother could survive the death of her mother then so could I. I also feel that going up to mom's residence is a way of letting people know that I am ok. They had never seen a family like ours...like all of yours on this board...families who care, hands on! They thought I would crumble and jump into the grave with my mother. They see my strength..which reflects my mother.

Dealing with this disease is another thing..there were days I thought I would crumble.....it was only by coming here and being held up, almost literally, by all those here, along with my husband, son and brother, did I come through to the other side intact. On my hands and knees crawling to the finish line!

Hospice is there whne you need them. It isn't like days of old when they only had 6 months or so to go.... once they see a failure to thrive they will step in.

I too worried if they would kick mom out and send her to a nursing home. Once she stopped walking they kept referring to her as "total care"...that scared me. But they kept assuring me that she wasn't going anywhere. These caring people come to love our parents. They realy don't want to let them go.

Try to reassure your mom that she doesn't need to worry about tomorrow. Today is enough of a problem.

Love, Meg

 
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Old 09-24-2011, 04:30 PM   #19
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Re: I ***HATE*** This Disease!!!

TC... that is what we do here. We are strong when we have to be and then we come here and throw it all on the table. That is what gets us through the worst of it. That is what gives us the strength to go back and do it again. What is why this we stay here

Having a good facility, no matter what or where it is, is a blessing for sure. Believe the owner. They are in the trenches with your step dad every day, doing a great job, so believe what they tell you. Of course your Mom worries. She wants what is best and her condition make her unsure. Thankfully she has you to reassure her. Hospice is a God send!! They step in and do whatever is needed to keep your loved one where they are. If you need a caregiver to bath you Dad then that's possible. There will be a nurse and a social worker as well. Mom even has a volunteer that comes in just to be with her. This gives me a break They have even worked with me to set it up so they are there when I am not. They come when needed and are totally amazing. So take comfort in knowing that your step dad will be ok where he is.

As for strength.... I think I get that from my Dad. His was a quiet strength of acceptance. If life is not what you want then make a good life of what you have. He believed in giving and forgiving. I get my feisty determination from my Mom. But most of all I look back with a realistic view of all that I have done and survived.... as if I was reading somebody else life story. How would I respond. I have to pat myself on the back I change the things I don't like since I have that ability. Then when I get all wrapped up in mental distress I sit down and have a conversation with myself We are what we think and I think I am ok.. therefore I am I get up and just keep going. It's taken me years to get here but here I am.

You did good in finding a wonderful place for your step dad. You are taking care of your Mom's worries as well. You are doing good things and you also have the strength you need because you have survived this far... and will until the end... with a little help from our friends!

Love, deb

 
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Old 09-24-2011, 06:18 PM   #20
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Re: I ***HATE*** This Disease!!!

"These caring people come to love our parents. They really don't want to let them go."

I LOVE that Meg! So well said! Yes - I completely feel this from my stepdad's caregivers - most especially from the wife. I've told her she has become like another sister to me.

Thanks for sharing where you two feel you got your strength from. I would have to really think about that in my case. It's probably some weird amalgamation of my two dads - my biological and my stepdad. Definitely not from my mom

Got to spend some time with a good friend today. I was sharing with her about how depressed I've been feeling, and she was able to point out how things have sort of......backed up on me. It was hard to hear - but yet helpful. So many things in my life are in such a state of flux......relationship / work / etc. Oh well......just gotta keep going......and...yes....take it one day at a time. I used to hate that saying when I was younger, but there's so much truth and wisdom in it!

 
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Old 09-24-2011, 06:45 PM   #21
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Re: I ***HATE*** This Disease!!!

Deb.."we come here and throw it all on the table".
That made me laugh...it is true but it made me laugh....I just about threw the whole darn table a few times!

And, TC, don't be depressed about being depressed...it will only make it worse....

I mean, sheesh...no wonder any of us get depressed....this ain't no party!
Love, Meg

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Old 09-24-2011, 08:44 PM   #22
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Re: I ***HATE*** This Disease!!!

Why stop with the table... throw out the chairs too Then we can all sit on the floor with a bottle of sweet wine.

TC... we all have our down days. This disease will drag you just as far as you let it. Throw in the rest of life and it's truly not easy. Yes, we all have our down times and there is nothing wrong with that. It is the downs that makes the ups so very good. And the ups will come again. That is what you have to remember. For as bad as it seems it will get better. It is that hope that truly gets me past those low moment. Knowing I can deal with whatever it is for as long as necessary... knowing that at some point it will be better. With that in mind I can focus on making it better instead of how bad it is. I'm not always successful but with practice it happens more and more.

Good for your friend. A true friend is one that will be honest with you and you will listen. They are rare and you are blessed. We all need somebody that loves us enough to be honest

Love, deb

 
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Old 09-25-2011, 09:24 AM   #23
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Re: I ***HATE*** This Disease!!!

TC,

I am sorry your step Dad had been through bad NH for 6 months.

We are lucky that we found a very good memory unit - a residential home for memory impaired in Vermont. We looked and looked and almost gave up. We did see some bad homes in IL and some good ones. There are horrible NH and we didn't even consider them.
It takes a long time to find what we wanted and we were on the waiting list for 9 months. A good home sometimes has a long waiting list!

Sorry you have no other good NH nearby. I sure think it is possible that your stepDad will stay where he is as long as the caregivers/owners are consicentious and will do the right thing.

Good luck,
Nina

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Old 09-30-2011, 11:14 AM   #24
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Re: I ***HATE*** This Disease!!!

So - it's been an interesting week. My mom called me last weekend to tell me that one of the patients who was at the skilled nursing facility where my stepdad had spent some time (2 different 100 day medicare stays after hospitalization) had died.

My mom has become friends with the wife, and really wanted to pay her respects, but it was too far for her to drive, etc etc. So guess who took her?? Yup - me. And here's the weird part: of all the funeral homes / cemeteries, etc, yup - it had to be at the one where all of my family is laid to rest and where my parents will be as well. I have spent plenty of time out there this past year pre-planning for my folks. To have to go out there for a funeral for someone I barely knew was......not exactly fun. To sit there with my mom in the chapel and wonder........when will we be out here for our family.........was just not a pleasant thought.

I've wanted to write to you all all week about this. Kept telling myself "no Jan - don't - they're tired of hearing you vent", but......here I am!! Venting yet again. I've done my best to shake it off - to remind myself it was a favor to my mom (and she has thanked me several times for taking her - although I saw how much it shook her up and wondered if I did the right thing by taking her??).

I really am looking for the bright spots in life - though I'm sure it doesn't sound like it as of late. My crappy health hasn't been helping, but I am happy to say I seem to be turning a corner in that department! Changes to my thyroid meds do seem to be helping my energy levels, so that is a positive.

Although I continue to walk through this "fog" as Meg called it - I am seeing changes in myself. I think because this disease is so *big*, and losing my stepdad who has been so central in my life, I find joy in the little things. Spending time with my dogs is one of the most healing and joyful things for me. Although my rescue has turned my household upside down (!!), he's one of the best things that has happened to me.

Don't know if I've shared the story of him - the short version: I had pulled up to my vet clinic to get bad news about both of my Australian Shepherds. A man pulled up right next to me. We entered the clinic at the same time. I saw this adorable dog looking very scared in his arms. He told the clinic staff he had been trying for a week to catch this dog. The dog was so afraid to approach a human it took some yummy canned food and a week of persistence on the man's part to catch him.

He had stopped at the clinic to have the dog scanned for a microchip. No microchip - no collar - after filing all the appropriate reports and waiting the 30 days, "Jack" has become a member of my household. He has not been an easy dog as he was definitely abused - never housebroken - never trained at all. But.......what a love. And I realize as I'm writing this......though I've been plenty frustrated at times.......he's been worth every moment. He's laying right next to me as I write this, and my other sweet Bella dog is near me too. Such comfort.......such unconditional love!

Life is so unpredictable. We like to think of the aspects that we want / desire - we want love - we want fulfillment - we want purpose - we want happiness. Hopefully we get those aspects - but then there's also sorrow - disease - cancer - loss - struggle - loss of purpose. Right now I'm not looking for any big answers, as it's all too difficult to make sense out of. I'm doing my best to find comfort and a smile in the little things, and get through the big, difficult patches as best as I can.........

 
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Old 09-30-2011, 12:34 PM   #25
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Re: I ***HATE*** This Disease!!!

Do you really think it was just a coincidence that you were at the same funeral home .. maybe it was the universe gettng you ready for that next trip there. A dress rehearsal, of sorts.

And gee...please don't thnk you can't come here and whine....it is what we do best when we're not here pretending like we have all the answers. Hah!!

We are nothing if not a soft place to fall for one another.

We are a caring group...or we wouldn't be here in the first place...we care for our parents/spouses and we care for little lost animals. "We care for".
We should all get tshirts with that slogan. Or we could embroider it on our towels.

And looking for the bright spots...gotta do it! They are all over..all around us. Keep looking and they will show themselves.

And as for looking for answers...well, that one made me laugh. I was always looking for answers. I was lucky some days to even know the questions!

Love, Meg

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Old 09-30-2011, 12:38 PM   #26
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Re: I ***HATE*** This Disease!!!

Going to HB and whining kept me halfways sane for 5 years! What are friends for?

Love,

Martha

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Old 09-30-2011, 12:55 PM   #27
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Re: I ***HATE*** This Disease!!!

Martha...you made me laugh out loud!! Ain't it the truth!

Love, Meg

 
Old 09-30-2011, 03:14 PM   #28
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Re: I ***HATE*** This Disease!!!

TC,

Maybe your Mom needs an outing. Just think your Mom is the one dealing with your stepDad everyday seeing him and making sure things are working out OK in the home.
Perhaps both of you need to find some nice place to go. Sorry the funeral home was not a good choice, but I guess your Mom probably needs to have some social gathering. Maybe she thinks this will come one day too. Does not hurt to prepare for it. I sure hope you guys have the final planning - not everyone likes to do that...

Try to see that your Mom is also in stress like you. She must have felt worse since he is her spouse.

Hang in there.

Regards,
Nina

Last edited by ninamarc; 09-30-2011 at 10:24 PM.

 
Old 09-30-2011, 03:18 PM   #29
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Re: I ***HATE*** This Disease!!!

Is there a stomach problem? Are any antacids used?

 
Old 09-30-2011, 09:59 PM   #30
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Re: I ***HATE*** This Disease!!!

TC... This is where we come to find the support we need, a place to vent our feelings, and as Meg said a soft place to fall. This is where you find those that get it! When our thoughts get all jumbled up in the good and bad, right and wrong, up and down, we can just come here and sort it all out the best we can or know that it will be ok.

I am sure going to the same funeral home and cemetery was not first on your priority list but it was what your Mom wanted to do and you were there for her. Don't question it... you helped Mom and I am sure you helped her friend as well. And in many ways you helped yourself. Not all of life is pleasant. There are many times we have to do things that are uncomfortable. But each time we do we find a little more strength. Then you go home, look around, and see the blessings that are right there in front of you. Your new rescue is a blessing that was meant to be and a comfort after a trying time. It's all about balance. The good will carry you through the rough times.

Many times it is how you look at something and the thoughts you carry with you. Focus on what you did for Mom and her friend rather than what the future may bring. Focus on your blessings at home. Hold the best of what you can close.... whine about the rest and then put it to rest. You have done two good things (taking Mom and the rescue). They will bought bring light to your life

Yep, life is unpredictable for sure. If somebody had told me 15 years ago I would be where I am now I would have laughed and declared it a joke. But here I am. It's not what I imagined but it's what I have. What's next? I don't know. What I do know is that I have handled life so far, through good times and not so good times, and I can continue to do whatever I need to do. I see the same in you. Each of us have survived to this moment and we will go on... and on... if necessary.... with a little help from our friends

Throwing you a stack of pretty towels for your puppy's bed. What a blessing for you!

Love, deb

 
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