Tuesday, February 24, 2009

Challenges

This isn't going to be a typical Life of a Southern Belle post...there...you've had fair warning.

I'm having a moment....or perhaps a series of moments... I'll also say that, goodness knows, there are so many people out there with much worse things happening in their lives. I count my blessings everyday but this is what is causing me stress and if I can't vent about it here...well...there aren't many places I can vent about it.

I'm feeling edgy. For those of you who are familiar with my mother and my brother Ned, you know that they're quite a pair. Ned is 40 years old and has Downs Syndrome. Mother is almost 81 and suffers from an Alzheimer's-like dementia. They've rarely ever been apart (not at all save ONE night in the last ten years) so you can imagine the dependence they have on each other. About a year ago, we had to find someone to help them at home because mother refused to move to assisted living unless Ned was with her. We've tried so hard to reason with her (it isn't possible) and accommodate them but it's been hard...and tiring...a real BIG stress in our lives for several years.

About four years ago, we discovered that a non-profit faith-based group (Aldersgate Special Needs Mission) was endeavoring to build homes for developmentally disabled adults around the state. As God's grace would have it, they were planning to build one of the homes on the property of The Oaks, a Methodist Church supported Life Care Community, less than ten miles from our farm where mother grew up. We were excited and encouraged, believing that this was our answered prayer.

Aldersgate is a group of good solid very well meaning people who were not well-equipped to accomplish the task at hand...good hearted, I have to believe, but TERRIBLE communicators. All we asked was that somebody touch base with us by e-mail every few weeks...even if the message was "no progress" at least we would know that the whole thing hadn't folded up. We wanted to assist but they didn't take us up on our many many offers. Hank is the most patient man in the world and even HE got frustrated. They were going to be ready to take residents in 2006....then in the spring of 2007....then March of 2008....NOW they're saying that the doors will open in approximately 30 days.

We've been up and down and up and down. Mother doesn't want to move but says she's going to do what she has to do because Ned needs to get settled and she "doesn't want him to wake up one morning and find her dead in her bed." (ARRRGGGHHHHHHH....thank you for allowing me to scream!) We don't want him to wake up and find her dead in her bed either BUT she keeps saying this in front of him...over and over.

It is time....past time. Mother needs to be in assisted living and Ned needs a chance to live his life to the fullest extent possible...he's been sitting at home with her these past few years and doesn't have any friends his own age. He just hangs around with old people. The situation has been extremely complicated to manage....we couldn't just go in and take him away even though we've always believed that Ned needed to be out in a good group home with friends and activities and maybe a job. Mother just wouldn't let him go. We couldn't talk her into it and we tried plenty!

Hank and I went over to pick out Mother's room on Sunday afternoon. She will have a sitting room and a bedroom and can look out the door and see the front door of the house Ned will be living in. They can walk over to see each other any time they want.

I guess I'm a coward...I want to snap my fingers and have this all over and done with. Packing them up and driving them away from their house is just going to be AWFUL! (How in the WORLD are we going to move them both at one time...she refuses to go before him and won't let him go before her...AAARRRGGGGHHHH...I think I was due a second scream!)

I know...I'm being a big baby. Thanks for letting me have a moment. I'll buck up and in true Southern Belle fashion will get them organized, packed up and moved as soon as we get the good word. It will be a tough few weeks though...mother doesn't deal well with stress, and this is going to be MEGASTRESS for her. She will call us seven or eight times a day from the moment we tell her that the move is scheduled and we'll have to go round and round and round with the details over and over and over. At some point she'll say she's not going at all and will have quite a few VERY unkind things to say about me as this will ALL be my fault in her eyes. I'm prepared for it but I never enjoy it, and even though I know it's "the dementia talking" it will still hurt my feelings. I may need to get a refill on my flying pills.

Keep us all in your prayers. BIG PRAYERS!

39 comments:

  1. My friend, my situation with my little mother (she's in rehab right now) pales in comparison to what you are having to deal with about your mother and brother...

    God Bless You!!!

    You're in my prayers as you go through this "new" journey in your life.

    ~Beth

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  2. Hopefully God can give you a peace about it all soon! I can't imagine how difficult this must be!

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  3. Bless you, you are going through alot right now. I guarantee I would have let fly with more than just 2 screams. It does sound like you have found the best solution to the situation, Ned absolutely needs to be around people his own age and have his own life. Dementia is so difficult to deal with. But I have no doubt that you will come through this even stronger and things will work out for the best. But you probably should get a refill on the flying pills lol. Feel free to vent anytime, that's what we're here for. Hugs, Kathy

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  4. That is definately a hard situation. I will never forget when we had to take my grandmother to a home. I can still see her wrapping the seatbelt around her arm so we couldn't get her out of the car. It all worked out and she was ok at the new place. I know she wanted to stay at her house but she wouldn't have been happy.

    Good luck and I'll be praying for you guys

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  5. Bless your heart! You have quite a journey ahead of you . . . Will definetely keep you in my prayers!

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  6. Bless your heart! You have quite a journey ahead of you . . . Will definetely keep you in my prayers!

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  7. Sounds like it will be a fantastic setup for them!
    In the meantime, hears to hoping things go as smoothly as possible and pharmacuetical aids!

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  8. I will pray for you because I can feel your pain. Our situation is similar but different. My mother needs assisted living but she lives with my older brother who suffers from lazyness. She refuses to go anywhere without him so she is stuck in a bad neighborhood with my bad brother. I won't take my kids to see her it is so bad. Keep hopeing that everything works out. If not, there is always medication.

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  9. You are in my thoughts and prayers!

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  10. I'm so sorry you're going through this. I've had the same experience as Kristen w/ my great aunt. She didn't want to go to Assisted Living either, but once she got there, she liked it and was relieved that she no longer had to prepare her own meals. The hard part will just be getting them there. It's a miracle that you found 2 places across the street from each other. I hope your brother will like his new home too.

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  11. I under stand completely. Our situation is similar except my brother was born with half a brain so he gets some stuff and not other stuff. My mother babied him til she unexpectedly passed away a year ago. My sister who moved in with them to help when mom got sick is still there. My brother is lazy, rude, no friends a slob and severely depressed also. Finding help has been so hard. I am glad you found places for them. I wish you the best. I hope we can find a place that he can live with some assistence also! I am praying for you!

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  12. I will keep your family in my prayers. Good for you for doing what is best for both of them.

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  13. Prayers going out for your family! You're such a good daughter. This is a tough time, I know... you're totally allowed to scream in frustruation!

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  14. I'm so sorry you are going through this. I watched my mom go through so much frustration with her mom, who was too stubborn to move when she couldn't take care of herself anymore. It was horrible to watch my mom be so stressed and frustrated. She vowed after her mother passed to NEVER put her kids through that kind of thing. I hope things start going smoother for you and you can get them both settled and happy. I'll keep you and them in my prayers.

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  15. What a tough spot to be in. Scream, yell, rant all you want. You deserve it. I hope the next few weeks go smoothly for everyone.

    Stay strong.

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  16. first, about aldersgate... i don't know if you are of methodist denomination or not (i am), but i do believe that when the wesley brothers died the methodical way of doing things died with them... as i have found all methodist based programs to be very disorganized.
    that being said, i hope your mother's and brother's move will go much more smoothly than this time leading up to it has. it does sound extremely frustrating... as co dependence is hard enough with which to deal without dementia and downs compounding the problem. i will say a prayer for you all. in the meantime, give your frustration to GOD and remember that you are dealing more with the illnesses rather than your loved ones who possess them:)
    love,
    dani

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  17. my G'Ma is in the early stages of alzheimers and refuses to go into assited living....
    I will be keeping you and your family in my thoughts and prayers

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  18. Your post hit quite the nerve with me today. I know what you are going through. My sister and I have been dealing with my 89 year old mother. She had a hip replacement over 2 years ago, from the rehab facility we went to a assisted living facility for about 4 months. Finally brought her home and she now has an aide 24/7.

    Her next stop will be a nursing home. She is frail and happier at home but continues to complain about everything.

    My sister and I try our best, but we both work full time and have families. So after spending some quality time with our mom we do spend some time venting to each other. Oh yes, we have 2 brothers and they have detached (is that a word???)themselves from the situation.

    When you consider all of the issues they are dealing with, i.e. physical and emotional health, financial issues, friends, family, boredom etc. The stress generated by these issues can be overwhelming for both the elderly person and their family.

    It truly helps to talk about it and rest assured there are plenty of "us" out there. We are indeed the "sandwich" generation.

    Good luck with your mom and your brother. Prepare yourself for a lot of stress and nasty phone calls. The most important thing is making sure she has nice people to sit with at meal time. That will make all the difference in the world.

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  19. wow.... I can totally see the need to scream!!! What a stressful situation - but the outcome sounds like it will be for the best... its just getting there. It'll all be OK in the end... hang in there!

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  20. What a difficult, difficult situation! But hooray for finding a solution that will help both your Mother and your Brother! The moving will be tricky, but I hope that you will be able to do it without too much heartache. I have seen first hand what happens to those with dementia, it is extremely hard for the person and for the families, but despite it all, you still seem to be handling it very, very well!!

    I will definetley keep your family in my prayers! Good luck!

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  21. You are in my prayers. I know you already know this but you are doing what is best for everyone.

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  22. You are not being a baby at all. These life changing moves are very difficult and very emotional! I am so glad that you can discuss this with us! It will make you feel better. Thank goodness you have support from your hubby! And this is most definitely the right thing. There is a point in these situations that becomes unsafe. I would def get a refill on the pills!! Keep us posted. xoxo

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  23. You're a very good daughter and sister. It sounds as if it will work out when they are both moved. I hope this all goes quickly, because, as you have stated, you are going to be dealing with quite a lot of stress. I will have you and your family in my thoughts.

    I should forward you the mean emails that my mom sends me on a daily basis. You sound like the loving daughter she wishes I were.

    Hugs,
    Lisa

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  24. Bless your heart! That's such a difficult situation to be dealing with. Big cyber hug to you!!!

    Lori

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  25. This sounds like the most stressful move in the history of moves. I can't even begin to fathom how you are feeling. I hope it goes better than expected, God willing.

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  26. Oh Belle, you and your family will be in my thoughts and prayers. I hope this move will be as smooth as possible for all involved.

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  27. Well, good luck, and I hope the transition will be a smooth one...

    (yes, yes, I *did* read your post...)

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  28. I've been thinking about your post since I read it yesterday. I didn't have time to comment then but just wanted to let you know I'm thinking about you. There's not much I can really say as I am just beginning the whole aging parent pathway but I wanted you to know I AM thinking of you and will keep you in my prayers. Feel free to vent and we will listen!

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  29. Oh my, you certainly have your hands full! I wish I could offer a magic answer and make it all work out smoothly. I do think it helps knowing what your going into and that you're going to be the bad guy in the beginning. When things settle, I hope your mother is able to see how happy your brother is in his new home and that will bring her some peace of mind which will certainly bring peace to you.

    You're in my prayers,
    Jo

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  30. You have my heartfelt sympathies. I went through a nightmare moving my mom into assisted living after she broke her hip. I can't imagine also having to provide emotional support for 2 people. Hang in there & send me an e-mail if you'd like to have someone to talk to. ♥ Diane

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  31. The house to assisted living or nursing home transition is NEVER easy. We had the same thing with my grandparents when I was little - they had to transition from living with us when the stairs became too much for them - to elderly housing - to a nursing home. I hope the process goes as smoothly as possible for you.

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  32. Sending big prayers, big love, and big support...

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  33. Oh my...this must be so rough on you. I went through the same thing with my mother when I moved her into the nursing home. She had alzheimer's and it was getting so much worse. She had a few choice words for me and some of them I didn't even know she knew. Please keep the faith..it will get better. It was horrible tho, when I would go see her and she wouldn't know me or my kids...just made me cry.

    Take care..hugz,
    Michele

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  34. It is a lot of stress and you are not being a baby...so much to take care of and wanting only the best for your Mom and Ned. I am so thankful you shared your story....I will be honored to pray for your family. Scream anytime...I scream in my head pretty much from dawn to dusk...I am a big wimp!

    God Bless you all.

    p.s. I came by to thank you for visiting my blog and leaving a comment and am so glad that I did...your story really touched my heart. Thanks so much for posting it.

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  35. Vent away. I think that is a really tough situation. I am praying!

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  36. Big Prayers go out to you and your whole family. I do know one thing God has taught me in my short life....He will not give you more than you can handle.....! I know this will all work out because she could not have a better daughter and Ned could not have a better sister.

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  37. Wow--that sounds like a lot of work to orchestrate! What a nice living situation it will be, though, for them to be able to live so close! Hope it happens very soon and goes as smoothly as possible. It definitely sounds like the best thing for both of them even though they'll resist it at first.

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  38. Oh goodness, this is a rough time for you and I will pray for you and your family. My elderly mother lives with my brother and I hope the arrangement continues to work out for them! Thinking of you....

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  39. Ok, found the backstory. You do have your hands full! wishing you the best in this situation.

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