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11/26/13 9:46 P

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Mom 83, has been with me since her stroke in 2008. She made a good recovery - staying active at the senior center- taking care of most her needs here. On the 12th mom fell and broke her hip. Surgery the 13th - off to rehab center the 16th. She wants to come home - but until she can safely get around she cannot come home. I am spending a lot of time there, visiting, dr appts, observing - keeping her calm. I hate her being there. I work full time - so I have to know she is safe at home. Until then - she is in the best possible place.

Diane

Life is too important to be taken seriously!

The more I think about it, the more I realize there is nothing more artistic than to love others. Vincent Van Gogh



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11/14/13 11:08 A

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I'm fairly new on my journey. Only about 14 months in with two parents with dementia. It'll be a long haul if their hearts don't give out or get a stroke.

"Your inner athlete is dying to play!" - Cory Everson

Change doesn't happen without struggle.


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5/30/13 3:01 A

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Courti, Annie, i so appreciate you sharing your journey. When I became a full time caregiver for my mother, she was 93, and I didn't expect her to last more than a few months. I'd been going down daily for many years before that, and I could see the decline. When she asked me to stay with her, I conferred with the family, and we agreed it would be the best solution. With dementia, moving her from her home of almost 60 years was going to really confuse her, and she got belligerent when she became confused.

The three months turned into seven years. They were very hard years for me, it was so hard to jump back into the 'bad little girl' role. Mom wanted everything done her way, because that is what she was used to. But I was used to running my own life and home, and it was so hard to keep backing down and saying, 'Yes, Mom'. I felt like I lost who I was, I was just being the maid. After a year and a half, I was a basket case. It's hard to watch your parents decline. It's hard to be yelled at, and complained to, all day long, when all you're trying to do is keep them home and happy. She'd say nasty things to my little son, he quit singing because she told him he was terrible (he wasn't, she was just confused and in a bad mood, a common side effect of dementia.) I had to choose between being respectful to my mother and standing up for my son, a nasty choice to have to make.

Then, the best thing of all happened, I found Spark. And someone on another team, also a caregiver, told me that we couldn't both be in charge. That was the source of the conflict, she was used to being charge, but was not able to do so anymore. It was time for me to step up to the plate and create a new normal. Stand up for my son, take the reins, and don't feel bad about it. It changed my life. This team changed my life. Here, people understood the difficulties inherent in caregiving, and had helpful suggestions.

Two of the best things I learned were the power of misdirection, and the importance of finding the blessings hidden in the mire. I'll talk more about them later, they're a story of their own.

Anyway, after Mom's 100th birthday, she fell, and broke her hip. She had surgery, and was up and walking with a walker, all seemed well. She was transferred to a nearby nursing home for rehab. Then things starting going downhill. I had to go in for all meals, because she wouldn't eat for the nurse. I put Ensure in her coffee and made Ensure milkshakes with her ice cream, whatever nourishment I could get into her.

On the day she was scheduled to be sent back home, she went into hospice instead. I went to the ladies room, and while I was gone, she perked up, looked around, and asked my husband, "Where is the new country, and why aren't I there yet?" She then lapsed back into a coma, and never recovered. She passed an hour after Christmas, 1 am on the 26th. I'd been sitting with her all day and evening, going home just a few hours earlier.

She was comfortable, never regained consciousness, but it took days for her to die, slowly slipping away more and more. It was a horrible experience, and it still haunts me, two years later. Even though she was 100, and lived a very full life, it was still too soon. I still wasn't really prepared. I still miss her, at the oddest moments will find my eyes tearing again. I love the idea of birthdays in heaven instead of death dates, what a beautiful idea.

I really wasn't prepared to suddenly be 'old'. To be the matriarch of the family. I still feel like a kid inside, when did I get old? It's an odd transition no one talks about, going from child to head of the family, the passing of the baton.

I have more freedom now, but things inside me have changed, I'm not the person I was. In some ways, that's a very good thing. I've grown. In other ways, I'm still in survival mode, the 'normal' setting for caregivers. I'm having a hard time thinking ahead, making plans, dreaming dreams. I still have trouble dreaming a new future, grabbing an idea and making it come alive. I used to do that all the time, now, it's a struggle. I survived for years by not wanting anything more than I had, being content. It's hard to switch gears, and now use your discontent to stretch and grow and accomplish new goals. Hmmmm.

"Life is more than food. . ." Luke 12:23a


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ANNIESADVENTURE's Photo ANNIESADVENTURE Posts: 6,694
5/30/13 12:18 A

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Judy, I can share my experiences when my parents passed away.

Mom was a hard worker and lived a very full life. She had serious health issues for many years that she didn't share outside the immediate family. She was not a good patient. When she could no longer do all the things she had done for years (teaching, gardening and canning, music, active at church, inviting people over for homemade dinners, sewing, reading, genealogy, photo albums, and so forth), she felt she was "no good." Her eye sight was failing and the increased medications made her sleepy and forgetful.
We had home hospice visits after she had cancer. I had good and bad experiences with home hospice. She was still mobile but shaky so it was worrisome when she would get up when we were sleeping. We called 911 to help get her up when she fell. We were not getting sleep. Dad was taking care of her when I was at work. He was becoming so frail that we wondered if we would lose him first. He was down to 120 pounds. I hired a niece to come in part time during the day to help. She fixed lunch for them and cared for both of them while I was at work.
Even though Hospice explained the steps and symptoms leading to the end, it was hard to know where we were in the process. Because of that, we agreed to move her to an inpatient Hospital facility. She went to sleep the day after we moved her and never woke again. She passed away four days after we moved her. The facility was great but I will always regret that I put her through that when we could have held out four more days at home. She always hated leaving her home.

Dad bounced back physically and regained a healthy weight during the next year. He and I became very close. I am glad I had that time with him. About a year after Mom passed, I realized I needed to hire another niece to stay with Dad while I worked. At 90, he had a knee replaced. Physical therapy recommended he use a walker all the time for his balance.
When he was 91, the economy turned bad and I was downsized at work so I was able to stay home with him. He was good company. He went everywhere I went...which was much less than when I was unencumbered! We went to church, grocery shopping, out to eat. Once a year we would make the 10 hour drive to spend a week or two with one of my sisters until the trip became too much for him.
When he was 93, he had blood clots in the lung and was never the same. I think he was passed out too long. We spent the next three months bouncing between the hospital and an inpatient rehab facility. I stayed with him because he became apprehensive if he couldn't see one of us. Sis would come during the day so I could go home and shower and change clothes. By this time, Sis was retired and divorced, so she moved in with us when he came home to stay. I could not have made it without her. Dad required someone in the room 24/7. His health declined. He used a reclining lift chair and a wheelchair. We had home health care nurses, occasionally therapists and bath aid. When they signed off, we were on our own. We had to thicken all liquids so he wouldn't choke. At times food was pureed until he could swallow softer foods. He did not sleep well. Many nights we talked and sang when he woke. There were times I had to use the nebulizer, mostly when he was sleeping or napping because he wasn't too happy about it. It worked better if I would sing quietly when he stirred.
Eventually we used a lift to move him from bed to chair. As his health failed, the therapist suggested we move his hospital bed into the living room and not get him up anymore. I knew it was not going to be long. He passed away two days later.
The visiting physician was changing him from home nursing care to home hospice, scheduled to start the morning he passed away. That made it very difficult because he wasn't yet on Hospice, so we had to call 911. The home nursing group said they couldn't come out to confirm he was gone because he was scheduled to start Hospice. The EMTs had to come and check for vitals, run an EKG or whatever they did. I was concerned that they might go to extreme measures to revive him. A policeman was there, asking questions separately of Sis and me, conferring by phone with the visiting physician, probably confirming what we said. . He had to stay until the local funeral home came to take Dad away.

There are still things that cause me to weep when I remember the details of the last week and day for each of them. Sometimes grief takes me by surprise and tears come.

My life changed with each loss. Mom and I were very close, so I thought I would be a basket case but I wasn't. Maybe I had grieved for so long, every time we almost lost her. The funeral director said he had never seen a more joyous funeral. We had carried a heavy burden for many years. It was a relief, and a time for celebrating everything we believed, that we would see her again in heaven.
With Dad, it was a little bit harder for me after the funeral. Being a caregiver means getting up and doing what needs to be done, regardless of whether we are tired or sick or don't feel like it. We do what needs to be done, and we keep going.

In the year since, everything caught up with me. I was exhausted. I could take a nap when I wanted to! I no longer had to keep going. I spent the first three months of this year fighting bronchitis and viral infections that were going around. I gained weight, a lot of weight, over the last few years. I felt unorganized and in a fog. Mobility has become painful and limited (5 hip surgeries over many years). I felt so much older. When did I become part of the older generation? I prepaid my funeral. I think I gave up on myself even back when Dad (and I) became more homebound before SIs moved in.

So now it's time to dig myself out and start living healthy again. Get back to goal setting, menu planning, and some form of exercise.



Edited by: ANNIESADVENTURE at: 5/30/2013 (00:36)



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5/29/13 8:07 P

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My mom was in Hospice House when she died. By the time they called us early in the monring, she had passed. I felt guilty not bering there as I was with her almost day and night, but they told me to go home to rest. I think mom did it on purpose as she didn't want me there, but she was in a coma state ane hae the 'fish mouth'. That was hard to take even if the book they gave me explained it. She died Dec. 22 and I felt she wanted to be with my dad for Christmas.

Someone on SP told me tht when someone passes that will be their new birthday ...in heaven. So, on Dec. 22, 2013, that will be mom's 3rd birthday in heaven. It is easier to cope thinking that way.

When my SIL had Hospice coming to the house, she had the bed, never had to use the oxygen, but they were very helpful, she died with family around, but she died while we were on our way to her house. Her son called to tell us. We spent a lot of time with her the day before though. She went through H#$$ with her cancer, so she is at peace with her dad and brother in heaven.

Courti - Florida (used to live in Ohio)


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5/29/13 3:06 P

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So glad to see you here Annie and Courti, what blessings you both have been to us as well as to your loved ones. Annie, I so understand sticking with Spark through the caregiving, learning good eating habits, even if the stress hormone cortisol is thwarting our successes, we're building for the future.

For those of you who have completed a caregiving journey, can you share a little about the changes that occurred when your loved one passed on? Many are just passing into that stage now, and have no idea what to expect.

"Life is more than food. . ." Luke 12:23a


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5/28/13 7:52 A

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Lisa, sorry for ther loss of your mom. Take care of yourself.

ND, hang in there. I'm glad your mom didn't break anything.

Jennifer, our furbabies certainly do count. I lost mine in 2004 and still miss her. They are our babies.I'll be in same position as you one day, with my MIL. We help in some ways but she lives in her own house and copes for herself right now.

Annie, so glad your sister was there to help you out. Some have no one to help in their caregiving.

Courti - Florida (used to live in Ohio)


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5/28/13 5:32 A

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I took care of my parents for years. Mother passed away more than seven years ago, and Dad passed last year. Those were not easy years. The last year and half of Dad's life, my sister moved in with me to help care for Dad. I could not have done it alone.
Year after year I kept going, doing what I had to do. Now that Dad is gone I feel tired and unorganized. I am at my highest weight now. But I'm still here at Spark, trying to get back to healthy living.

Edited by: ANNIESADVENTURE at: 5/28/2013 (05:35)



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5/17/13 2:51 P

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TKRYSTINA, you're right. No question, the furry babies are part of the family as well, and their passing leaves just as much a void.

Jennifer, Courti, so good to hear from you again, I appreciate the update. It looks like many of us have gone from one caregiving activity to another, with perhaps more in the future. I think many of us slide into this role so easily, we haven't realized that we've been caregiving for a while. As Mom or Dad gets older, we may check in on them more, run some errands, mow the lawn, take them to a doctor visit, help with the finances. . .they're still at home, still running things for the most part, still getting around. . .but, we've been picking up the slack without even realizing it.

My hat's off to all of you past, current, and future caregivers, who give of yourself so often, and often without even realizing you're doing so.

"Life is more than food. . ." Luke 12:23a


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CHEYENNERAE's Photo CHEYENNERAE Posts: 2,081
5/16/13 12:51 P

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Furry babies count too. I now live with 5 of them including a 17 year old Chow.

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5/16/13 12:23 P

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Well hello Judy. (Bunny-lady) It's good to see you back!!!

TKRYSTINA - I'm so, so sorry for your loss. This was Sunday, as in Mother's Day? Bless your heart. I've gone through the loss of both my parents now, so I know something of how hard it is.

Oh my. I just noticed. The date. I had thought of it days ago, but here it is, the 16th. My Daddy went to live in heaven 3 years ago today at 9:34 pm. It was a Sunday also, and I can still remember parts of it vividly.
Of course I still miss him, but life hasn't given me much peace these last years to be able to stop and dwell on things. I feel guilty that I don't think of him more. Maybe I just know he is safe now and HAPPY with my Mom. MY how he missed her those last 12 years. When he came to live down here, he talked of her so much, he brought her back to me mentally, and I used to dream about her a lot. In the dreams, she had always come back to help "him." (she'd never died in these dreams - some big misunderstanding - she'd been off somewhere ill and convalescing I think.) I had to explain to her more than once that we had sold the house and couldn't stay there. Sounds odd to others probably.

This month last year - and I hate to mention it in the same thread, because I'd never compare it with the loss of a human (not out loud so anybody would know anyway) - but last May I lost both my precious dogs, one to sudden onset cancer, (VERY hard on all of us) and the other to old age - had been doing some major "caregiving" for the latter for six months, and her passing was a peaceful event. So peaceful I felt sort of good about it. She got to rest finally. Those losses are a bit fresher is all - the year of firsts. (and they lived here, so the vacancy was horrendous) Sorry to babble on about them, it's just what is going on with me.

I'm not doing any real caregiving now. My MIL and FIL may be headed that way, at 85 and 86 yo, but so far DH has been able to handle the incidents. Both of them live in senior apts and are able to get around, but both have health issues that have to be watched carefully. MIL is on warfarin and started hemorrhaging after a colonoscopy recently - had to be hospitalized. Kind of scary to me - glad she was able to call for an ambulance! FIL has fairly severe diabetes and I believe CHF and also gets bad vertigo. So we'll see how it all unfolds as the months and years pass.

Thanks so much for opening this back up Judy. I do hope it can be revived, although I don't know I'll have much current news to contribute. And yes, this was always my favorite team and you my favorite leader.

All for now. Jennifer

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5/16/13 12:32 A

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NDTEACHER, I don't think people appreciate the healing process. Mom's been gone for two years now, but I still miss her. I miss the person she was, not the person dementia turned her into. Yet, even with all those years to prepare for her death, and the week in hospice, it still doesn't really prepare you. Yes, I've moved on. No, I'm not depressed. But. healing is a process, a long process, where the pain that pops up out of nowhere gets replaced with happier memories. They pop up at the oddest moments.

You're amazing, just in case no one's told you that recently.


"Life is more than food. . ." Luke 12:23a


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5/16/13 12:25 A

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So sorry to hear of your loss just a few short days ago. My heart goes out to you and your family.

It's been two years now since my mom passed, after seven years of full-time caregiving and another dozen or so as a daily but not live-in caregiver. Now, my MIL, who also has Alzheimer's, has fallen and broken her hip. My SIL has been her caretaker for the last several years, as I was still caring for my mom when she needed in-home care. Now, her care is beyond SIL's ability (she did a fantastic job all those years), and MIL will be staying in the nursing home from now on.

The home is near me, so the baton is being at least partially passed back into my hand, which is only fair. SIL has gone beyond the call of duty for years now, while holding down a full-time job. Bless paid sitters that make that possible.

Anyway, I've been going down to see mom (what we call MIL, since my mom is gone) most days. It is nice to be able to go home afterward, knowing she'll be changed and fed and put safely to bed. I tucked her in tonight and kissed her goodnight, she seems content.

"Life is more than food. . ." Luke 12:23a


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CHEYENNERAE's Photo CHEYENNERAE Posts: 2,081
5/15/13 11:24 P

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I was care giver to my mom who lost her battle with cancer Sunday evening at about 5:10 pm.

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5/15/13 10:07 P

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Hi Judy,

I have "healed" since losing my brother in 2004, not sure if you recall but he had autism, high functioning, had his own apartment, cared for his needs, own business shining shoes in a mall, did not drive, but ver independent until he got sick. Took a little over a year to get to under 90 pounds, wheelchair bound, completely dependent. Now I fear my journey is beginning with both my parents. Spent two days in the hospital with my dad when he had congestive heart failure. He has slowed down quite a bit, stopped fixing small engines on the scale he used to but he is going to be 91 in August:) I took my mom to the doctor yesterday because I visited after church on Sunday and commented she had dirt on her face, I learned she had fallen the Wednesday before. Although I didn't find out right away I still managed to get her to the doctor, knee and wrist x-ray turned out okay but she did break her nose. She has fallen 3-4 times in the last couple years, lucky she didn't break any bones because the nurse left a message and said she has osteoporosis. I have been struggling with weight loss in fact since Christmas I have put on weight and hard time even posting so to be truthful your inquiry is the thing I needed to jog me back to reality. This is the group/Team I like the best but it has kind of died out and I get that, but I miss it. You are the best leader of any and I mean that sincerely, hope we can revive this group again.

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5/15/13 9:59 P

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My caregiving was with my mom who passed in 2010. Since then we helped in the care of my SIL (my DH's sister) she passed of cancer in January and now we help my MIL by getting groceries etc. but she is able to get around, has breathing problems sometimes and had some scares in the pass few months with a bad fall, but doing okay now.

Courti - Florida (used to live in Ohio)


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5/15/13 9:38 P

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I've been away for a while, now I'm back and wondering how everyone is coming on your journey. Are you still caregiving? If so, is it a parent, grandparent, spouse, child, friend, other? What stage are they in, what can they do, what can you do? How much freedom do you have to take a little time away? Let's share where we are in our journey, so that others will be able to relate, and ask questions if they haven't hit that stage yet.

"Life is more than food. . ." Luke 12:23a


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