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Hi ddarkangel,
This is so very sad. I am a huge hospice fan, but I have found lately that they aren't all "created equal." In fact I wrote about it this month. I've been reading on this forum about too many hospice situations which surprise me. I now realize I was spoiled.

Still, you may be right about your being a nurse. That should not figure in to this. She is your mother and you are in as much emotional pain as anyone. But, if they are overwhelmed, that may be their (unfortunate) rationale.

People are still chatting away and "venting" but they are on different threads. These threads sometimes take on a life of their own for awhile and then people drift to another question.

We are thinking of you and we are with you in our hearts.

Carol
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Thanx so much. I cannot tell you how on many long nites this site has more than saved my life. The journey is my moms but it is hard to figure out my place in it. It has been the greatest being able to blog with all of you and know that I am not alone. It is an amazing site! take care
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You've given as much as you've gotten. That's the power of everyone sharing their part of the journey.
Carol
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Speaking of hospice, I'm just starting to check into this now- What do they do? I've never dealt with them. What I REALLY would like is someone to stay about 48 hours a month at HIS house, so we can get a break. As in one weekend a month. VA will only give me 4 hours a day which really doesn't help me--at his house it's not feasible because he needs full time care. At my house it's not feasible because taking a break from him (to ME anyway) means being AWAY from him for awhile--someone else in my home dealing with him would only stress me out more. How can I get someone to do this weekend thing without it costing me a fortune?
It's always a roller coaster ride as you all know. Last night he shaved himself and was so sweet to deal with. This morning he clogged my toilet at five a.m. and repeatedly flushed the toilet and flooded my bathroom. I'm constantly having to make up contraptions to keep him from nonsense. Now it's a cardboard cover on the toilet handle so he can't flush (he never flushes the damn thing anyway unless he's thrown something in there that doesn't belong there) Respite stay coming in 5 days---I cannot 'freakin' wait. To be able to take a shower without someone beating on the door, to have company over without a drama show,to be able to sleep at night without being woken up with nonsense, to not be accused of nonsense---- 10 days of normal!
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my mother still lives a block away but I still "do" for her. I find the hardest part right now is when is she REALLY sic (kidney infection with fever of 104.7) and when is is the same old aches. She will fib to me too.
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Dear ddarkangel, I have been wondering about you. Sorry to hear about your mom, and your bad experience with Hospice. Sad! Sorry you have to go through this all alone. Since you're a nurse, does that help you know what to expect, etc.? Or is it difficult, still because it's your mom? Hope her passing is not painful or stressful. Don't mean to burden you with so many questions, but one more: how are you doing? Take care. Keep us posted, and be good to you, both.
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yes i too have been wondering about ddarkangel . i trie dto find what happen to her mother . there is so much on this and i cant find her anywhere . let me know what happen . i will be praying for her and all of us caregivers .
i am going to bring dad home this tues from rehab , they dont take good ccare of him butthe phyiscal therapy is wonderful .
in a way i do want him home but in other way i dont want to bring him home cuz he has gotten worst . hollarin whiney and i am scared its going to be 4 times hard work for me ...
i enjoyed my freedom sept 25th till here soon . i tried to do everything i want to do but end up didnt cuz havin to go back forth to nursing home and here home . been busy every weekend to stock up all the firewood , get ready for winter .
a very confsuing moments and scared what it be like to bring him home again .
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ddarkangel,

We are all here for you. Some days are tougher than others. So let us help you with your burden of grief.
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Hello,
I have seen good hospice and bad hospice in my area. I beleive it is the nurse that makes the difference to me.
I have only worked with hospice in the nursing homes, so that may be different than in your own home.

I am writing just because I do need to vent.
I am not having a good week-end. Everything is starting to close in on me again. I go thro this every once in a while. This is just another time, but it is not easy.

I guess I am just feeling sorry for myself. My mother has lived with us for about 3-4 years I have lost track.
I have no privacy. I never have time for myself at home with no one there. I just want to kick back in my own home and be alone for awhile. Is that bad of me?

I do not vent to friends because they have their own problems to deal with. I feel like I am being whiny since I did make the decision to move her into my home.

I do not regreat it at all. But there are days I wish I could have her gone for a day.

Am I wrong in feeling this way?
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no ure not wrong to feel that way . i feel the same way too . it;ll be almost 3 yrs since dad has been with me .
he willbe coming home tmr and im feeling sick to my stomach about it cuz i enjoyed comin and going as i please , aftertmr it all stops and i willbe a prisoner inmyown home again .
dont feel bad about that . i keep teling myself well winters coming so u be stuck at home anyway . might just swell enjoy pa all over again ....
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I think that is what has started my downfall. Winter is coming!!! I also feel like a prisoner in my own home.
Thank you iharebeck I am not the only one.
That in itself makes me feel better. I guess misery love company.
Now I know I am not alone
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hey secretsister, lharde, roxie and lovingdaughter, i am still here. I have to come when I know I wont start crying. Hospice finally gave me 24hr nurses so you know that means we are near the end of the journey. Made the decision to just let them take over sedating and medicating her around the clock now its too hard to watch her struggling and in pain. I could not have made it thru this journey without all of you just knowing I was not alone in this and there are so many out there who are much braver and stronger than I could have ever been. Its funny, I keep going over the last few months looking for things I might do over and regret and wish I could do again and I cant honestly think of any. Maybe wish I had more patience on some days but then I would not be me. For her sake, I hope she leaves this earth soon, without pain and struggle. I am doing my best to make it so. Thanx for all your kind words and support. I wont be able to look at those falsies she made me buy without chuckling! Now there is a moment to cherish! I will be back when this is complete..... keep the hot chocolate and popcorn going. The support is amazing and sustaining. You are all angels! be back soon.....^V^
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bless your heart to find the time to let us all know how you are doing ... i will be thinking of you and am so sorry that she is leaving about anytime now . i know the heart aches in fact im feeling it right now . brings back memories when my mom was passing away . she s alot happier , no pain no fuss .. she s at the golden gates waitin for her love ones to come and greet her as i know she is waiting for my dad . your mom will have all the love ones waiting to greet her ,, wish i could send you flowers or something . in fact i just wanna hug you ! god bless...
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ddarkangel,
I will be thinking of you each and every day. I am sorry to hear about your mother.
Never look back at what might have been.
Everyone here knows you did a wonderful job taking care of your loved one.
You keep in you the good times and let the rough times go.
Thinking of you!
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Dear ddarkangel, so sorry to hear about your mom's pain and struggling. Hopefully Hospice can help her with that. We'll watch and pray along with you during these difficult moments. Take care, and may God be with you and your mom.
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It was so heart warming to see post from ROXIE and CAT you were both hear about 2 and 1/2 years ago when I first came on here and were both so great and kept me as sane as was possible-my caregiving ended as far as the husband-he died June 26 but have been helping my sister with our Mom some and will continue to do that when ever I can get back to their state. I want to stay on here and try to pay back to others who need an ear to listen to as I did-four months later I am still dealing with details and trying to get what I am due from insurances and his union-it is good I finally got a backbone. I love you dear ladies and look forward keeping up with your struggles-GOD BLESS
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ddarkangel,
Our prayers are with you. This is such a difficult time and you need support from those around you and here too. Thinking of you.
Linda
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At least you all know that you are doing all you can and more for your loved ones most of the time with no help and someday that will be such a relieft for you when they are gone-it was with me after he died I knew I had done all that was possible and have no quilt feelings now and am able to start the rest of my life and will never forget the special caregivers I met here.
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Darkangel I know this is very hard for you but with hospice you know she is in good hands and you have done all you could and that will be a comfort to you when she leaves this world to go to be with the Lord and will be at peace and that will give you the peace you need and she is ready for life after death her suffering will be at an end and she will be at peace as my husband is finally when he stopped going to PT at the nursing home I knew he was ready he wanted to go on and I did tell him it was allright to leave and to go to be with his lord and I felt like I and our adult children did the right thing taking him off the life support meds and have no regrets.
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HI YOU ALL .. WENT TO SEE DAD TODAY , SAYS HE DONT FEEL GOOD AND WANTS TO HOME HOME . I TOL DHIM TMR MORNING YOURE COMING HOME . BLESS HIS HEART MY HEART JUST ACHE , I JUST PICTURE MYSELF IN THAT BED AND ALL SCARY LONELY . GEEEZE HE DOES NEEDS TO BE AT HOME WITH HIS FAMILY THAT LOVES HIM .
DDARKANGEL , CHECK IN SOON , MISS HEARING FROM YOU ..
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Bless you, lhardbeck, and bless your heart! Ddarkangel, too.
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I read and reread everyone's venting on here and it saddens me that life gets so difficult when for all of you when all you are trying to do is take good care of your folks in their time of need.

It also scares the beejeebies out of me because my husband and I are preparing to move in with his parents because they are having health problems and totally refuse to move out of their home. He built this house 55 years ago and they have always lived here. They have accumulated "stuff" for all of this time, too.
It is getting so hard to maintain their house and yard and personal selves and go home and try to take care of my own home.
We are moving from a 3300 sq foot house to a 1000 sq ft of space. We are going to rent our home out, pack and move most of our stuff to a storage unit and live in their basement, which has to be remodeled. Now it is just a basement. We are having the tiles tested for asbestos. It will need about $10000 worht or updates just so we can live down there. But we are basically saving them a lot of money from having to pay for assisted living.
My dilemna now is that I am getting very nervous about this and even though my heart tells me it is the right thing to do, my head tells me that "I am crazy" and so do my friends. My kids and my husbands siblings (who live out of state) are supportive.
Do any of you have any positive feedback or a good suggestions? I would appreciate hearing from you.
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I had moved into my parents home about 2 years ago. It has been a nitemare ever since . Please think twice about it . Once you are there, you will not be able to leave due to a lot of guilt. The only way you will be able to have a life again is if ( sorry for saying this) but if they pass. I now am just facing that I will not be able to have a life until then. I l;ove them very much , but please think twice before doing this biggest step of your life . Good luck . I know you'll make the wright decision. Go with your heart.
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THINK!!!! How long will they last in their home even with you there with them?? I stopped letting my parents make decisions a long time ago. I realized that they could no longer make wise and thoughtful choices and could only think of themselves. I guess it comes with age.

You are uprooting your lives to accommodate them, and that is commendable. However, this is not going to be easy. Take the picture in your mind and triple the stress and loss of privacy and independence. If they were in hospice and had a limited time left, then of course, this would be a no brainer.

From the way that you described them, they are just set in their ways and are happy to have you do a 180 rather than bend a little to make things easier for you. My parents refused to leave their home. Dad died at 92 and 4 months later mom was made to move in with us. No way was I leaving my home. Six months later a contractor bought her home and tore it down since it was such a mess. It could not be remodeled. This was do to the fact that they stayed in the home too long and could not keep up with it!!!!!!!!!

Also, the out of state siblings are supportive. Of course; they are not disrupting their lives and are relived that you two will do it for them!!!!!!!! See if they will take turns and measure their reactions. I could never do what you are planning to do, but you have our support. I just think that there has to be a better way. Do you two have POA? for banking and real estate? See a lawyer immediately, one who is an elder lawyer who knows how to set up a trust!! This way you can protect their money. Good luck.
Linda
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did not get to bring dad home today . got me all fired up , they were saying if i got himout ofthere then insurance wont pay for this , etc . so giving him another week . oh boy ,,,
i can just hear dad get all upset . which im leavin here soon to go see him . very upsetting...
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As a nurse in a long term care facility, and having friends with elderly parents, I see both sides of this coin. Many times I have sat with adult children or hugged them as they made the decision to place their parents in long term or assisted living facilities. I have heard, we didn't want to do this, people will think we don't care or I feel horrible so the guilt of feeling sometimes put upon or the guilt of placing them in a home is fifty/fifty. First, remember, you also need to have a life. There are people who can help, there are adult day care facilities like pre school children have, there are senior citizen facilities where they can go to play bingo or cards or spend time with others their age. I have a very dear friend who was taking care of her father, no matter what, she was not going to allow him to be placed and he refused to go to the senior citizens group. My husband and I even kept her dad a few times so they could go out. Eventually it became evident that she had no choice, her own health was suffering. They found a wonderful assisted living facility and he is as happy as can be there. Her decision was a good one. It is honorable, your dedication, but reach out there are ways to cope with this. If you allow yourself to get sick, then what? You will not be a bad person if you do this, they will still have their independence and someone to care for them and you can still be there for them, most facilities allow the residents to leave for dinners, or overnight trips home. But whatever you do, keep reaching out, you also need support. jays mom
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Teristeve - don't do it! I live with my mom in a lovely little house on 5+acres. I have been here for a year and my health is being threatened. Mom is 94 and in Stage 6 of Alz. My blood pressure used to be 120 and today at the doctors it was 144 (I always forget the "over" numbers) My heart rate is now in the 80's where it used to be 60 to 70. It is stress and resentment. My life has been taken away from me. I used to take ballet classes three times a week, help run an art gallery, paint...well, let's just say I was extremely active. In theory you are doing a wonderful, selfless thing for your inlaws but also putting yourself at hell's door. Have you exhausted every other alternative? Spoken to social workers? Lawyers? Is your husband still working? That means most everything will be on your shoulders. Siblings may be supportive but when it comes down to brass tacks it is usually a different story. Think it over again, dear heart. You see on these pages what others go though. Your inlaws can only get worse and worse. I wish you only the very best from the bottom of my heart.
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Look, it is a personal decision. Every family is different and the care every elder needs is different. For every person who posts don't do it, there is someone who says we'll support you if you want to try. All you can do is consider your own situation and that of your family, which includes your elder. There is alot of research to show that people do live longer and are happier at home - but if you have a rocky relationship it may never work.

Lately I've read several postings from people who poured their hearts out after losing their elder - be it spouse or parent. You might want to consider what you really want at the end of the day - and start end of life planning at the same time you are making where they live decisions. It may end up saving you untold grief and possibly even recriminations after they are gone. Just be honest with yourself and don't be seduced by someone else's story when you will have to live with your own. If it means long term care, so be it - if it means pissing off your surly teenager and keeping mom at home, so be it. If it means armtwisting siblings to help go for it - just remember to focus on the end, not the now.
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There comes a time when you need to think of yourself-I had reached that point with my husband and had felt his mind was affected and I was right when he became criticial he had gross brain damage and had made the decision to place him after 15 times in rehab within a few years and he was very ill-as I knew and died 3 days after his last hospital admission-no one would listen to me how sick he was and dementia had started-the social worker said I was wrong-we were married almost 47 years and I did not know what was true according to the experts - I was proved right-you have to listen to your feelings-we lost him almost 4 months ago and the details and paperwork are overwhelming and someone I thought was being helpful getting me my benifts had a motive-now I know why they say not to make any major decisions for a year-I almost signed away my major savings to an agent who was "helping me" I was lucky that my son pointed out to me some things and saved me a big mistake -be very careful what you agree to during the months following a death-go very slowly and get other opions.
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As most of you are saying, every situation is so different. That's why it's so wonderful to have you all giving your opinions. In the end, we have to look at what seems right for us and our families.

There is a great deal of wisdom in getting the end-of-life paperwork done long before any emergency arises. Thankfully, Austin's son helped save her from a financial disaster. Work with trusted companies. Check with the State Bar Association if you are looking into an attorney and don't have other references.

As far as elders moving in with you - that is very, very touchy and personal. For some, it's the very best move. For others, it's a disaster. It is something that must be carefully considered, because it's harder to "undo" once you've done it than it is to not make the move in the first place. If everyone can have some privacy and there is mutual respect, it
often works well. But when family dynamics aren't good to begin with, it rarely works out.

You are all so generous in sharing your experiences so people can read through and see what situation most closely fits theirs. Thanks for being such caring people.

Carol
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