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Debo7893 Asked March 2015

Nursing home or not?

Hi this is my first time actually asking a question but I do read alot of the forum. I am really going through some distressing issues about whether or not to place my parents in a nursing home or continue taking care of them at my home. My mom has CHF, COPD, diabetes and is legally blind. She is on Hospice and has been for about 2 years now. She is experiencing quite a bit of swelling (from water retention) and this morning she has blisters on her legs and is weeping. I am totally homebound and have been for a few years now and I am going crazy. I feel like a prisoner in my own home. I do everything for both of them, all they do is sit in their chairs and watch TV. I am very conflicted and would like some input. thanks

karscotlin Mar 2015
I am taking care of my mother who is 96. Often I feel very resentful too, like my life is ticking away. Your parents seem a lot worse off than my mother and there are two of them. I couldn't take it, I know. However, I know my mother would not even try to adapt to a nursing home and would probably last a month if I put her in one. How much help do you have? Normally I have three people that come in every week. I am divorced with no husband or other household members to help. I am going away for 11 days in May and someone will stay here 24/7. My mother pays for the help. Yes I feel guilty about it, but I do it anyway. It's a lot cheaper than a nursing home. If having more help doesn't cut it for you then by all means put them in a home. They will get more stimulation along with the pluses that others have mentioned. Enough is enough. I have no siblings. Yours should be helping you more. Go out for the entire day or half a day at least twice a week. The siblings should come over in the eve. so you and your husband can go out every week, just the two of you.

notrydoyoda Mar 2015
Debby, I suggest looking at your situation of being housebound and going crazy with your parents like a social worker possibly would.

That might help bring some objectivity to the situation and make it easier for you to move your insights into action.

If you were your own social worker worker looking in at the dynamics from the outside objectively, what would you do?

Do it and then find somewhere in your Masters in Social Work training to write about it in a paper or talk about in class.

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golden23 Mar 2015
debo - How are you doing? Have you found a facility? Good for you working on a Masters in Social Work. You will be a force to contend with.

Vent away - that belongs on any thread! (((((((((hugs))))))))

Eldercare2016 Mar 2015
Yes, it is time to find a nursing home. You have done far more than anyone could possibly expect and you have a right to your own life. Just choose the best place you can afford. Check on them regularly.

As for this comment left by someone: "Right! It is so amazing how they can sit back in their own homes and judge me." It is not surprising at all. I have relatives who do the same but they don't want to get involved. Ignore them. They are useless. If this is their attitude they are not going to help. It's not fair but that's the way it is.

blannie Mar 2015
Debo I'd start calling the hospice group the morning they're to be there to confirm that someone is coming. That's terrible behavior on their part! :(

Debo7893 Mar 2015
I know from reading prior posts how siblings treat the person doing the caregiving. It is like we are beneath them. It makes me so angry that there are so many caregivers out there that are being taken advantage of and treated so disrespectfully. I swear, after I get my life back I am going to become an advocate for the caregivers and try to find ways to find help for those who need it. I am taking this period in my life to work on my master's in social work just for this purpose. Even my hospice organization let's me down. They tell me they will have someone come and give me a respite time and I get all ready and excited, plan the one to two hours they will be here (oh boy, I can actually go to lunch) and the time arrives, guess what nobody shows up. That's a whole different subject, sorry just had to vent. I guess I should have put that comment on the "my whine today" thread.

Debo7893 Mar 2015
Cmag, you are so right in the thinking about me. I am very insightful and I do realize why I am doing what I am doing. My one brother told me recently that he had gained respect for me since I had stepped up to take care of them, that I had a place in heaven. Really? You mean I didn't before? I have always been a kind and respectful person to those around me, and just because you didn't take the time to realize it doesn't make it so, the only one I tended to hurt was myself. I really don't care what my brothers think at this point, I just need to realize what is the best for my parents. I think that is the hardest realization to come to. They do not want to leave my home but I truly feel it would be best for everyone.

Countrymouse - Right! It is so amazing how they can sit back in their own homes and judge me. Don't help, don't call, just ignore me until I call to report something then tell me how I have a place in heaven for what I am doing. Don't they understand that I do not need their encouragement about where I will end up in the afterlife, I need help NOW. I have plans to not only tell them to go and whatever themselves but to also tell them if they don't like it they can bring their happy as... up here and get them and take care of things themselves. Thank you for your encouraging words.

Countrymouse Mar 2015
Just a thought to add, in case… If any of those wonderful brothers gives you grief over moving your parents, be ready to tell him sweetly to go and (whatever instruction you like to complete this phrase with) himself. It's astonishing how those who have yet to lift a finger consider themselves world authorities on the ethics of elder care; whereas the reality of your family's situation is that you are the authority on your parents' needs, having devoted so much to their later lives.

So be prepared, and then you won't get ambushed. Bet of luck, keep us updated.

notrydoyoda Mar 2015
You have an amazing amount and depth of self-insight. I think your progress may well need a therapist at this point to help you get over the hill so to speak.

Pardon the analogy, but the guilt crap sounds so deep that it sounds like you just need to find some higher ground where you can step out of it and live on a new plane.

You are a good person. It sounds like you had some growing experiences which some of us have more than others, but we all make mistakes that we must learn from. I made a majority of my mistakes while I was in college as well as in graduate school and I've learned form them.

I've know some online whose goal was to love their elderly mom or dad into being the non abusive loving parent that they never were and did it work. No!

I'm sorry that you spent 14 years trying to prove that you are the good person that you are. A person who did not have a good heart would have never tried to be the caregiver that you have been.

Sounds like you have all the ingredients in place. Now to just find a good place and make it so like they say on Star Trek. I'm glad our responses have brought you the validation that you need and will continue to need. Please keep in touch and we will keep cheer leading you through this ordeal. If you make some mistakes and sort of backslide into the mire of the guilt again, remember that it is baby steps that will get you out of that stuff and back up on some higher solid ground. If and when you make a mistake, recognize it for what it is, learn from it, refuse to beat yourself up over it and move forward. The main thing is to maintain a focus on walking on a healthier path than has been true in the past.

Good luck!

Debo7893 Mar 2015
Freqflyer, I am trying to shovel the guilt but it is really hard after all these years. I was the black sheep of the family, the one who was rebellous and did things noone agreed with, therefore I truly think most of my caregiving has been out of a need to show I am a good person with a good heart. But, I should not have done that because it didn't work and I have now spent 14 years taking care of parents that would rather be with one of my "wonderful" brothers. Oh well, anyway, I will work with that shovel. Take care and thank you so much for the help.
Emjo, I have already been through the medicaid process in preparation for this time. So that is done and in effect, all I have to do is find a place I like and feel will take good care of them. I know what you are saying is right and I am so glad this forum is here because I truly feel I just needed some validation for my decision. Take care and thanks for helping me

golden23 Mar 2015
(((((hugs))))) lots of people here have a good experience with facilities. Just do your homework and find somewhere that you can visit regularly to ease your mind and heart. You do have quite a lot of life left and have given up so much for your parents. Someone on here once wrote - "They can still have my love but not my life any more." I think that is ideal. By all means love and care for them - that does not necessarily mean 24/7 servitude for years and years. You need and deserve a break. They need and deserve 24/7 care by 3 shifts of trained workers.Just start the process. Do they have the funds to pay or will they have to go on Medicaid? There is lots if help on here re the process of getting parents on Medicaid. I am 77 and my mother is 102 and I still am caregiving, but at a distance. She is in a facility and looked after as well as any one can. I have to have a life apart from her. You need a life apart from your parents. Lets us know what steps you are taking towards the move.

freqflyer Mar 2015
Debo, also wouldn't your sweet young grandchildren rather remember their grandparents as being *grandparents* compared to while the future might hold with the continue decline of your parents.

With a nursing home, your parents would be around others of their own generation, oh my gosh imagine them talking to others about the music of their era that the person could also relate to, political figures that they grew up with, old movies they all enjoyed. Going to the dining room for lunch and/or dinner and dining with new found friends.

Thus, think positive about this... shovel that guilt into a closet and lock the door.

Debo7893 Mar 2015
Yes, cmag and blannie, you guys are both so right!!!! Dealing with incontinence daily and all of the things we all take care of is really difficult. I know from reading posts prior to my question how much I am like everyone else and need a break and fast. Sometimes I feel like I just want to cry. I do not go anywhere and all my friends have disserted me (not that I blame them). I am stuck 24/7 in my home and by myself with them. I do feel it would be best for them, I guess the hardest thing is actually making that decision and moving forward. One of the things I am scared about is how nursing homes have such a bad name and do I want to be in the position to have them go through something horrible and then bring them back home with me. I so much appreciate you guys, thank you so much for your input.

blannie Mar 2015
Debo my mom didn't want people coming in to her apt in independent living giving her meds twice a day. She fought me for months until she had a medical emergency (from forgetting to take them). At that point, I put my foot down and got them in. And after all of that time and resistance from her, she's fine with them!

Our elderly parents don't like any kind of change, even when it's good for them. Why should your parents want to go somewhere else, when you're meeting their every need? But that care for them comes at a great cost to you. I doubt your parents would knowingly choose to run you into the ground.

Now is the time to make that change. You should NOT feel guilty - you've done more than your share in taking care of your parents. And you can still be their strong advocate and loving daughter - just not their hands-on caregiver.

notrydoyoda Mar 2015
Debby, I would venture to say that at 58 you are at a turning point in your life.

You've spent the last 14 years, since you were 44, taking care of your mother and your father in your home which is very commendable. \

As you prepare to turn a new page ask yourself what do you want your life to look like in 20 or 30 more years? What would you like to accomplish and your husband like to accomplish in the next 20-30 years?

In other words, as you make the transition form being the primary caregiver to the primary advocate for your parents, you'll have a broader horizon before you with a big "What now?" question staring you in the face because the old answer for "What now?" will not be there as big as it once was.


Now the doctors are saying that they need more medically than what you and your husband can provide. At the same time, you need a major break from all that you have been doing. It may not be what they want, but it's what they need. That's where the pivotal change of role reversal for the adult child to aging parent takes place in the transition from want to need.

You can't fulfill their every want, but you can provide what they need in terms of care and safety that three shifts of people working 8 hours in a 24 hour day can provide which is not humanly possible for two people to do. In the long run, everyone will be better off once the transition is made.

Has the doctor explained the need for them to go to skilled care to them directly? If not, it would very likely be best for them to hear it from their doctor first.

Yes, it will be difficult on them because they have become so dependent upon you two, but it will also be difficult for you because being the direct caregivers has provided so much meaning and direction in your life that taking care of them has become a major part of you and that so much so it is driving you crazy.

They need the medical care that skilled place can provide 24/7. Ya'll need some greatly needed restored balance returned into your lives which you have plenty of years ahead of you still to live active lives.

You've done a great job of doing what is humanly possible for two people to do. You have nothing to feel guilty about unless you want to feel guilty for not being superwoman and superman. Yes, it is a hard thing to do, but they need more help than you two can provide and ya'll are burning out. To me, the biggest question is are ya'll ready for them to go to a nursing home? If not, then why not?

Take care and keep in touch.

Debo7893 Mar 2015
Freqflyer, that is funny you said that because I always tease my husband saying don't leave me or you are going to get custody of the kids, grandkids and parents.

Debo7893 Mar 2015
Thank you everyone for your very thoughtful posts. I am thinking exactly what everyone is saying but it is really hard. They are so dependent on me and my husband. I have these guilt feelings and I keep thinking I should just hang on. But, I also realize they need more medically than I know how to provide. My husband is an angel and will do whatever I choose but I know he would like to have our lives back. The doctors have said for about the last two years that they need to be in skilled care but it breaks my heart as I know this is not what they want.

jeannegibbs Mar 2015
I think it is a disservice to keep your parents in a private home with only one set of caregivers who get no breaks and who feel like prisoners. Your intentions are, no doubt, sterling. But your actions are not in your parents' best interests. Be sure the care center is close enough so that you can visit them often (maybe even everyday) but that they have access to trained professionals for three shifts a day. Hospice care can continue in the care center.

Please let us know what you decide and how this progresses. We care!

blannie Mar 2015
Your folks need to be in a professional care setting for their benefit and yours. You can get your life back and they can have 3-shifts of people caring for them. My mom is 95, so you could be taking care of one or both of them for many, many more years to come (16 years if they live as long as my mom!). Would you survive that if they stay with you? There is NO shame in getting them into a place away from your home.

Please keep us posted!

freqflyer Mar 2015
Debo7893, I just read your profile, so sorry to read that your parents have all these medical conditions while still in their 70's, which is young in today's standards. Fourteen years doing caregiving is going above and beyond as it sounds like your parents have needed round the clock care in the past few years if not longer.

Unless you come from a family of medical professionals, who understand all these medical issues from A-Z, I really feel it is long over due for your parents to move to a continuing care facility. Think about it this way, could you care for your parents for another 3 years, 5 years, or 10 years?

Please note that 1 out of every 3 caregiver dies leaving behind the person they were caring. What would happen to your parents? Would your husband have to quit work and care for them plus babysit the grandchildren?

notrydoyoda Mar 2015
You have been doing this for 14 years and it's driving you crazy.

So, I would say yes. It is time for them to go to a nursing home.

What has their doctor said about where they need to be?

What is your husband's opinion and feelings about this situation? I would imagine that with your children grown with families of their own that he's ready for ya'll to be a couple once again now that your nest is empty.

Take care of yourself and keep in touch.

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