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I like ezcare's comment about the "role reversal." When our parents become elderly and infirm, they become just like small children - incontinent, need to be fed and bathed - except they weigh 100+ pounds instead of 20. When it because obvious that I needed to put my father into assisted living and then into the nursing home, I did not feel ONE BIT guilty. I knew he would be safe there, get his meds on time, have other people around him, have some social activities provided, and if he went missing somebody would notice. This would not have been true if he were still in his own home alone. I was only around 40 at the time, working full-time and lived 9 hours away. I had no other options.
I did my research,and scoped out three different nursing homes that were located near the area where my father grew up. I brought him with me to visit each home so he could see what the options were "for the future" when the time came - and then allowed him to choose which one he liked best. He was aware that he was just "not with it" like he used to be and he verbalized that he overestimated his own ability to live in his 2-story colonial house alone and function independently. I kept talking up the advantages of having all of his meals prepared for him, his laundry done, room cleaned, etc.
I did what had to be done, handled all of his affairs without assistance. My husband agreed to rent a U-haul truck to help me move some of his things to the assisted living. I still remember that day.......because as we pulled away from his house for the last time, he turned to me wistfully and said, "will they have coffee there?" (He loved his morning coffee.) I assured him, yes, there would be plenty of coffee there and he could have it whenever he wanted. (They had a 24/7 coffee & tea bar there for the residents.) That seemed to satisfy him and we arrived at the home without incident.
I do not understand all of this "guilt" that I keep hearing on this forum. Why should we feel "guilty" about doing what is right for our parents, what is in their best health & safety interests, when they get to the point where they are no longer able to live alone? Believe me, you would feel far MORE guilty if they were at home and something happened because you did not have the medical or emotional expertise to know what to do.
As to the person who said their parent was "soaked in pee," that's often related to insufficient staff at the home. Most people in nursing homes are incontinent - and the staff would do nothing but change diapers non-stop in order to keep everyone as dry as we would prefer. Are any of you going to tell me that your own children NEVER sat in a wet or soiled diaper - even for a few minutes - until you found the time to change them when you were a young mother? It is curious that many of us hold a standard for the nursing homes that we did not hold for our own children.
I'm bringing my dad to the dentist today and he is also on Medicaid. After I pay the bill, I turn a copy of it into the nursing home and they deduct what I paid the dentist from his total living expenses that I pay for him each month. You may want to check into it at the facility where your mom lives. It isn't very public, but I happened to read something about it one time and inquired.
My mom has always been what you call the cat's meow, meaning she was the bell of the ball. Even now she does not look 90, however she is a shell now. Her voice has become scragley, and I have to ask her to repeat several times, her mind goes and comes, she cannot do anything for herself. Not even open the blinds in the morning which is something she loves to do. Her quality of life is just gone, gone far away and it makes me so very very sad.
Every now and then she says "when I get better" and I humor her. She is constantly in pain, arthuritis ain't no joke to a 90 yr old, and any kind of hip replacements just add coal to the fire.
She sits and stares out of the window from her bed yet when anyone pulls up she ask who is that so I don't think she is really looking at anything at all. It's sad to me, yes sad.
She says "how now brown cow" all the time, and counts off the months of the year trying desperately to cling onto any type of hope.
I am seriously considering putting her in a home too, mainly because I know I can't give her what she needs. I've talked to the care taker who will always discourage me (they say it's because they want to keep their jobs, I don't know) but just know that you did what you needed to do and don't let anyone tell you different. To thine own self be true!
The people here have been very loving and supportive to me...a blessing. My momz is verbally abusive to me...she was always that way, now with the alzheimers its worse.
I am a only child. No help from family ...or friends.
I am moving slowly getting things handled...have paperwork in progress....nursing home waiting for records...I AM IN THE PROCESS of getting her placed.
I feel guilt. I will be blamed for everything under the sun I know it...hell I am most of the time anyway.
My heallth is failing because of all of this...All I can do is keep you in my prayers..you have done the right thing. YOU ARE BRAVE,YOU ARE A GOOD DAUGHTER!
I pray GOD GIVES ME YOUR BRAND OF STRENGTH!
Bree
At this point things have pretty much settled down and mom has resigned herself to being in the nursing home. Mom is feeling better now, as her medications have been controlled better. I try to get over to see her every day for several hours, and my sister comes to visit as much as she can with her work schedule. Having her family visit is very important to her and that is the one thing that is helping her to adjust to the nursing home. Of course again I am making myself indespensible to her.
I tried to muddle through this for as long as I could until my own doctor told me I had to let go of the 24-hour care in our home, physically I just could not go on, and it was tearing me up inside thinking what if I made a mistake with her medications, overlooked something in her care, or what if she fell and broke her hip, or what if she started wandering out of the apartment while I was aspleep.
Anyway, 2009 was the most stressful, worst-case scenario year I have ever had, the most hear-breaking thing I have ever experienced is placing mom in a nursing home and then having her turn on us and take us to court, and having to move her things and mine into my sister's home (moves are always traumatic). I almost had a nervous breakdown over all of this, but I pretty much pieced back together now with medication and therapy.
The most important thing you can do to help your parents adjust to a nursing home is to be sure to come and visit often, do little things for them that make them happy, and make sure the place where you have put them is a good facility. A lot of times I have to be mom's advocate so things can get done properly.
It is no longer realistic to promise anyone that they will not end up in some type of facility. I think that we make these promises to our parents to help them overcome their fear of abandonment. It would be kinder if we had a frank discussion before the moment occurs. In that way, parents have made their wishes known, provided the caregiver with instructions, and understand their childrens' limitations. Too often caregiving is "sprung" on the child who steps up to the plate. This decision should not become a "lottery."
Perhaps we should focus on helping children have a meaningful dialogue with their parents before situations reach "critical mass." In this youth-fixated country of ours, we view aging as a disease. When was the last time you saw an nice, craggy, older face on your favorite television show? The result is fear of getting older. We fear aging...fear loss of independence...fear death. This is not a healthy way for anyone to live.
Those of us who are caregivers now need to speak up and make our wishes known to our children and future caregivers. Maybe our experiences will be another important legacy that our parents will leave us.
The guilt you feel is normal. Your head tells you you are doing the right thing, but your heart is torn up. I know, I've been there. Doing this alone is what is so hard. You need to find some support other than your family. I don't know what it is about families, maybe they are in denial, maybe they just can't handle seeing their parents declining so badly. You are the caregiver because somewhere in you, you found the strength to do so. They have not. You can't change them, so you need to look out for yourself. Your local area on the aging will probably have a caregiver support group if the face-to-face thing would help. This site is a lifeline for many caregivers. Stick around, we're good for each other.
I imagine you checked out different nursing homes and found the best that your parents could afford. I imagine also that you are dropping in at the nursing home at expected AND unexpected times to be sure the staff is treating your parents well. If your parents are in a "good" nursing home and you visit with them often, it sounds to me like you are doing all that one single working person could do!!! I am sorry about your brother who used to help you with your parents' care but had the stroke and now can neither walk nor talk. As for your other siblings - who knows what's wrong with them??!!!
I took care of her for 10 plus years, we did talk about her being put into a NH-she agreed to it-saying she didn't want me to be her babysitter.
She's in a nice NH but still ask me to take her home-She is not the same Mom i use to have, but my love for her hasn't changed.
I do a lot of crying, but it isn't from guilt anymore--it's because I know my best friend and Mom has gone away and I miss her so much.
She is still very sweet, never has been nasty, maybe thats what makes it so hard.
At first, we had all the siblings coming over to help or visit. Now, I'm lucky if my 1st and 3rd s-i-l come over at all. Well the oldest
helps out maybe every 2-3 weeks, but it seems when I call to ask her to sit with her mom, she sighs and says for how long?
It's not like I call her every day or every week and ask her to do it and my husband & I take her over to her house 3/4 of the time,
as well as pick her up. The 3rd just started a new job about 6-8 months ago. The 2nd, who is a lifesaver, takes her at least one night a week every other week. Since my husband, no. 4 child, is out of work right now--he helps me take care of her. I'm Primary Caregiver. Child no. 5, my 4th s-i-l, comes over and helps give her a shower almost every week. We have her going to an elderly Day Care Center 2-3 times/week. She has a nurse there, they do activities (socialization), she gets a hot lunch, and transportation to and fro. A better deal during the day than HHA. Don't get me wrong, HHA are great--they can help you with some of the homemaking, cooking, and give showers/baths. They just can't give meds, only a nurse can.
The way I look at this is, you did what is best for both your parents, as well as for yourself. Perhaps the staff at the nursing home can help support your feelings on this, or even your parents neurologist.
What may be upsetting to your parents is they may feel as though you have taken away their independence-and unfortunately they are not able to view the whole picture.
It sounds to me you did what is best for everyone involved-and you have to support your own feelings in this decision---If you have some time, perhaps going to some support group meetings of your local chapter of the Alzheimer's Association will be of value.The Alz Assoc-also has a hotline that is open 24/7-and that number is 1-800-272-3900.
I personally have gone thru this caregiver journey, and know what it is like to place someone in a facility. I also realize how VITAL caregiver support is. It is important that you DO NOT compromise your own health-which is so easy to do.
Stay strong, and do not let your emotions get the best of you-as for the others in your family, the situation is what it is.
Good luck!
Hap
It may help you get through the guilt if you think ROLE REVERSAL. At this point in your parents lives they are much like children in their ability to care for themselves and make good, safe choices. On the other hand, you are at a point in your life where you intuitively know how to handle this situation and have the confidence in yourself to do the right thing even if it hurts. Ask yourself what you would want your children to do if they found themselves in your situation. I am sure you would want them to do exactly what you are doing for your parents. Sometimes, love is as hard and cold as steel. This is certainly one of those times for you! If you did not love your parents it would be easy to go into denial like your siblings have and let things fall as they will. Then you would not have to feel any guilt because you could believe that it was your parents own fault if they screwed up. They are adults and should know better than to mess up with medication instructions or get themselves in dangerous situations. So let go of the guilt and continue to do THE RIGHT THING. You will have no regrets. I cannot say the same for your siblings once they experience the finality of your mom and dad's passing.