View Full Version : Nursing home and time spent, help me
I am asking for your experiences with your time spent visiting a loved one in a nursing home please. I know each person has to reach their own answer, but I need help with this. I have put a weight on myself that has become so heavy, I am at a loss. Short story, since October I have been commuting to the now standard average miles of 2,000 a week. Some weeks up to 2,400, all just me and my three big dogs. I used to call myself "Gypsy", now I call my life the Crazy Train. Mom was moved to the nursing home in Feb, that was when my commute really picked up.
Last week I stayed put for four days. I just could not get back in the car. The guilty was heavy. I tell myself with mom's disease, this won't last long. But then I switch to my dad. He needs me to do all bills, mail and such. The counselor at the home called me for another topic of moms care and the topic turned to my time. When she heard my story she said I should not feel this way. 6 hours with mom a day was probably not best for her and my life. I understand totally. If I was an hour away, I would just drop in daily and stay a short time. But I am all those miles away. So I struggle with my commute would be the same, even if I somehow only visited a short time.
My trip is :(we moved to tn) TN to MI 9 hours, stop at my vacant home to spend night and drop my dogs off, up in morning drive to other side of state 3 hours, back to dogs 3 hours at night, do this again three more days then back to TN for a couple days"............Crazy Train, I can hear Ozzy singing!
Adding: the gas cost, my car being miled out, my husband, my passions for gardening, biking, running are gone.
Holy smoke! That is not sustainable even in the short term. You need to talk to someone about this and finding some alternatives to manage what you, just you, perceive as your obligations. You are just one person. You have been with your parents all your life to some degree so don't feel that you are neglecting them when their needs change so dramatically. As long as you take on the whole load, they will not need to adjust so don't enable their dependency.
I really feel for you but get the help/counselling you need ASAP! Please!
Razz, I know that. Believe me I know:|( That's why I was up in the middle of the night posting. Yesterday after fours days of driving, I had some moment of rationalization. My care/ concern had over time was moving from love to obligation to resentment. Yesterday, I understood mom really did not know when I was there. I have read every caregiver, Alzheimer's, terminal loved one, site and article. This posting and putting those words in my face helped me. I will do a change today. Thank you.
Wow. So your dad lives in the town that your mom's nursing home is? Any way you could have her transferred to a place closer to you? Is your dad able to visit her?
At that distance once a month visit is heroic. Your dad could use your help weekly since he's alone. The other 6 days are yours.
If it helps, I'm a mental health nurse. I know stuff and you can call me an expert in self care and family systems and health systems, and tell yourself it's ok to do the weekly dad thing and the monthly mom thing.
Oh ... If your dad is in Michigan and you are in Tennessee then weekly is ridiculous. Monthly for both. Lots if people would help with bills and mail. Or have his bills forwarded to you inTN.
Sad Eyed Lady
4-17-14, 9:43am
The best thing seems to be if your parents could both be relocated near you, but that may not be possible for many reasons. Guilt is just part of it. My mother was in a nursing facility for about 7 months before her passing, with intermittent hospitalizations during that time. I lived in the same town so visiting was not a problem - after work, during lunch hours, whenever. At the time I FELT like I was doing all I could; being the only child I was "on call" for the nursing home at all hours when they thought I should be notified of anything, accompanying her to the hospital etc. At her passing I set by her bed and felt at peace knowing I had done all I could. BUT, afterword, in the months to come, I STILL felt guilt. Felt like I should have done MORE, been there MORE, quit work and taken care of her (although medically that was probably impossible), etc. So guilt rears its head no matter what you do I think. Given your distance you are going to burn out quickly if you try to keep to the schedule you have now. It's good you're making plans for a change. I hope you find one that works and you are happy with. Still, watch out for that old monster, guilt. He's a bad boy.
Everyone wants to live their life with no regrets...I am sure you don't want to realize that when mom passes the guilt consumes you that you should have done more... I am here to tell you that YOU are important too. If this is something you can do - then do it... BUT, if it is putting a strain on you in any area of your life you should re-evaluate. It seems like this schedule was something that was working for you, but is not any longer.
I take care of my 89 year old mom - living independently, legally blind and mentally "there" - once a week for five hours, so I sort of know where you are coming from in our obligation to be good daughters. Trust me when I say that I am stressed to the point of nausea on the days I must visit... This week, I had to go Monday, and then AGAIN on Tuesday! Double stress level!
Being in a nursing home is different, but I would assume you are very familiar with the facility and the staff. If you are confident that mom is receiving adequate care, I think it's perfectly fine to reduce your visits. (You mention she doesn't know you're there anyway). What would happen if you were not there as often? Would there be any negative impact? Does mom do better when you are there - I know some patients are more calm, eat better, etc when loved ones are around, whether they "know" you or not, they do seem to know someone who cares is present.
What about dad? Does he need you there often? Can some things be assigned to siblings, neighbors, friends, paid help - and online for the bills? Does he need you for social interaction (this is huge for my mom - she feels isolated and spins into depression without visits)? What will you do when mom passes?
My care/ concern had over time was moving from love to obligation to resentment. Yesterday, I understood mom really did not know when I was there. I have read every caregiver, Alzheimer's, terminal loved one, site and article. This posting and putting those words in my face helped me. I will do a change today. Thank you.
I've been there and I completely understand.
My mother was in two different nursing homes over the course of 2+ years (she had to be moved as her dementia progressed and she needed to be in a secure unit, which the first facility didn't have). At first, she was so upset about being there, and I felt horribly guilty about having to put her there, that I visited her every day or every other day (my father & only sibling had predeceased her so I had her POA and had to make all decisions). However, after working all day and also having a husband, home responsibilities (including handling her finances) and other activities, I soon began to feel resentful and overwhelmed. She also didn't really understand how often I was there. According to her, I hadn't been there in weeks when I had actually been there only two days before.
After discovering that my mom's two sisters each went to see her two times a week (sometimes taking along a cousin, friend, her hairdresser to cut her hair, etc.), we realized that she was having a visitor almost every day. I cut my visits back to two days a week unless she was having a medical issue or there was a care conference or special event at the facility. My aunts and I e-mailed each other to report on our visits with her, and sharing the stories about our visits made me feel better about not being there as often.
And I had nowhere near the commute you do - the first facility was about 10 miles away and the second was only about 7 miles away.
During her last month, I was there more often because she broke her hip, had surgery, then began to decline even more rapidly, and then passed away. I was with her when she died - an experience I wouldn't trade for anything.
After she died, I felt incredibly guilty, wondering whether I could/should have done more but told myself that I had made the best decisions I could thoughout the whole process. She was in a safe place and she died peacefully at age 88 in her own bed with excellent hospice care.
Numerous people told me that I had to take care of myself before I could take care of her - and this is also true for you.
It's hard, isn't it, ctg492, trying to figure out what's best for parents? And it's very easy to lose yourself and your life in the figuring.
We want the best for our children, but parents want the best for us, too, and I cannot imagine that your mother or father would want you to essentially surrender your life for her sake. It sounds to me like you need to make some choices and set some limits around what you are able to do, for your own health and the health of your family.
For the amount of money you are spending on the travel alone, you could hire someone in your father's community to help him with the level of care he needs. If he agrees that you need to manage his finances, you can certainly do that at a distance. It is also possible that you are doing more management in that area than you need to -- it happens when we get over-focused on parents' needs I have found. There are other options there, too. My aunt was in a care facility for many years, and my cousin (her closest family member) hired a woman to go see her twice a week, taking her for a walk outside when my aunt wanted to do that and otherwise just making sure all was well, reading to her, etc.
I have some experience in this area. My mom has lived with us for the past 13 years. She's mentally healthy but limited in mobility. My partner's mom lived with us for a time following a stroke. Ultimately she spent the last six months of her life in a nursing home -- it became too much for us to care for her. My partner visited her twice weekly while she was there, usually for 1 or 2 hours. We were lucky in that other family members visited too. For her, an hour or so seemed to be enough. She was tired after that. Our extended presence did not seem to be particularly beneficial for her -- when people did stay longer, she often slept and didn't pay them much mind.
I hope you are able to find a path that is a good one for all of your family.
ToomuchStuff
4-17-14, 10:46am
Alzheimers can go a couple of different directions. Most of those I knew that had it, lasted about three years, one (recently) shorter and one, MUCH longer (physically there, but mentally pretty much gone). I think the commute, might put you in the home as well.
Is your dad a computer user? Computer literate? If so, could you do some things like Skype, to help out and not have to travel so much? I agree on the having bills mailed to your home, otherwise, you might have to look into the costs of a caregiver for him to help with his needs (I am hesitant to recommend using somebody like a pastor after what I have seen).
My great aunt, had polio as a child and was moved into a nursing home, when her mom entered early to mid 90's. My grandmother had her moved to a closer one when she had to quit work to take care of her dying husband and mother (same year, months apart). She lived in a home an hour away, that we visited once a weekm until brain cancer hit my grandmother. I won't go into the reason I had to stop visiting her, here.
It is unfortunate, that love and guilt do go together. There really isn't anything that can be done about that.
Oh thank you all for your experiences, support and guidance. I took today off, and have been playing catch up with me time. So much going on, as we all do I know. I have lived my entire life with the obligation pit that mom put on me that I could never fill. Oh I know this. Even to the end I am allowing this to happen to me. Only I can allow this to happen to me. So that accounts as to why I surely must be doing this.
Mom has Pulmonary Fibrosis, advanced. This lack of oxygen has caused the state she is in. Dad has never even opened the mail in his life. Let alone known anything about the bills! We still own our home in mi and husband took a position in tn. It all was suppose to be fun.....such is life. So today I am trying to figure out how I will accomplish what I know I must do. Thanks again
Teacher Terry
4-17-14, 3:37pm
No matter how much you do you always feel guilty but eventually after some time has passed & the person it goes away. what you are doing is not sustainable. I would worry about you being so tired that you have a car accident. If for some reason your parents can't move by you then I think hiring someone to help your Dad may be the answer. HOme health agencies employ people to help with housework, make a meal, provide company etc so you may want to look into this for your Dad. I have been thru this 3x's and know how tough it is. Take Care:)
awakenedsoul
4-17-14, 5:34pm
ctg492, Sorry you are going through this. It sounds like you've gotten good advice. From your description, it sounds like way too much. I hope you find a solution.
mamalatte
4-17-14, 10:13pm
I echo the sentiment that what you are describing is herculean and unsustainable and you should not feel guilty if you decide to cut back on the visits. One purely practical suggestion: when you do make the trip, would it be possible to a) leave dogs at home b) don't stop at old house c) stay someplace near nursing home. This would at least eliminate the 6-hour daily round trip once you get there . . .
If it helps, I'm a mental health nurse. I know stuff and you can call me an expert in self care and family systems and health systems, and tell yourself it's ok to do the weekly dad thing and the monthly mom thing.
This is only one of the many reasons that I like you so much. Not just your posts, but the you that shines through everything you share.
To stay on topic, I spent the last year and a half...maybe two full years, it is kind of a blur...of my mother's life traveling between the very upper Midwest and the central part of Florida. I did it every 4-6 weeks because she was so difficult and kept getting tossed out of nursing homes.
I think avoiding regret was the impetus for all of that commuting, even concerning a person who truly did not deserve or respect the time and money I spent fixing all her crap. My daughter could not understand why I did so much for her, but that is another story. All these years later I am only occasionally and somewhat glad that I did all of that. Being the person I am now, I would do nearly everything differently.
If she needed the attention, I would have moved her up here. She did not want to do that, but I would have insisted. The alternative would have been to support her financially and let the rest happen as it might. That may sound cruel, but the cost to my health and my immediate family was, in retrospect, not worth all that sacrifice. And, I am not going into all of the stress I carried at a time when I was handling so many other things.
I cannot imagine the way you are trying to handle everything. I do not know if anyone has mentioned this, but it is possible to do your father's bills and all the rest from where you live. Best of everything to you in working this out. Blessings.
You cannot take care of anyone else if you do not take care of yourself. Just saying.
What I decided on my day off and thanks to everyone;
Today, I am making the MI commute. I am sitting the day with her, going to see dad. My dad thanks me each day, dad knows the stupid hours in the car. I am asking him to set up online banking with me. So I can remotely manage the bills. I have an in home visiting lady three hours, three days a week for him. I am "telling" that he has to have her shop and take him on errands. Not just sit and talk all the time! I have meals on wheels delivery too. I am (which he understands) telling him I have to cut back. Because of my obligation pit feeling I suffer from, I am going to make the crazy train commute every two weeks from now on. this is still a lot, but far less then I have been. Also with the Pulmonary Fibrosis,I know this won't last long.
What this has done to me has changed my life and thinking greatly. I will start another post on that.
My folks(mom) prepared for old age more then anyone I ever knew. Mom retired as a nurse from the same home she is in. She had her mom there also. She saw it all and wanted everything in order SO what is happening would not happen. Great plans fall short sometimes. Mom bought long term care insurance. Another post sometime about the pile of crap! Mom visited every retirement, assisted living home for years. Yet in the end would not implement any of her plans. Would never move to assisted living at least 10 years ago that should have happened. That in the end was the spiral that took this event on its course.
Very tough situation. I was fortunate enough to have my grandma in a nursing home 10min away and we still would make sure to visit her at least once a week (usually sunday after church) for an hour or two. My sister and I were in elementary school playing about 5 different sports all together and both my parents worked (mom 9-5 job, dad teacher and coach in fall and spring) When you are a parent,you have your children's lives and your own to deal with and even though she was 10min away, a lot of life gets in the way and you still can't see them everyday. It's unhealthy for you to do that because you wind up neglected your life and others in your life. Like others are saying, you have to care for yourself first.
Not sure what the situation is, but maybe you can see what it would be like putting her in a home closer to you in your state. Traveling expenses on top of paying for her nursing home must be an outrageous amount. Moving your mom and dad closer may help and also put you at ease a bit more knowing they are a quick drive away.
iris lilies
4-21-14, 5:34pm
OP, is your mother under hospice care?
Iris lillies, today I requested Hospice to call me for a meeting. I hope to get guidance from Hospice.
Hospice is great. Uncle is in a hospice facility and they gave such good info so compassionately to mom, his sister, while she was there.
iris lilies
4-21-14, 10:09pm
Iris lillies, today I requested Hospice to call me for a meeting. I hope to get guidance from Hospice.
Ok, that's good. Based on what you said about your mother most likely not living a long time, it definitely would be good to find out about Hospice care. Hospice care doesn't necessarily mean you mom has to move to a different physical place. My mother was under hospice care in her same nursing home. And Medicare pays for it because, in the long run, it's cost effective.
This has been the eye opening event of my life. What I am learning so far. if it matters and for just me it does, have paperwork, financial and bills in order. Check list with passwords for whoever is going to deal with it and keep it current. Have a plan for myself for all the ways I can think of that life could turn. Don't wait too long to implement the change of living. Meaning Before I can't climb steps or drive or whatever, move on or get help.
Mom was the planner of everything, just did not do anything soon enough though the plans were in place. "Someday" was the first word in almost all topics. Someday I will need help, Someday I will ...fill in the blank.
Hugs to you ctg492.
Hospice is an amazing organization and brought my family much peace and REAL help during my mom's passing & my grandmother's passing.
Keep reaching out to find support for yourself as well during this trying time.
Blackdog Lin
4-24-14, 10:35pm
Nothing to add, but sending prayers and good thoughts to you.....
rodeosweetheart
4-25-14, 4:15am
Ctg, I hear you about the "someday" thing. My husband's dad just passed away 2 weeks ago--in the midst of family infighting as to who would pay for the nursing home, one of the sibs sent a very pompous note about how "someday, we will have to sit down and plan for the inevitable future, start dealing with the hard questions" and I started laughing, the worst had already happened, with no plans in place, no planning, and no money. I said, "what exactly are they waiting for? Someday arrived years ago."
He died the next morning.
Thanks all. Everyone has a story or experience, I know I should not feel alone.
Hospice started last night, after a really long day. Why why was this not brought to my attention, put in front of me as a great option months ago. I will head back over today to see how mom is doing with the changes.
One of my old neighbors used to say , The eighth day of the week. In place of Someday ;)
Thanks all. Everyone has a story or experience, I know I should not feel alone.
Hospice started last night, after a really long day. Why why was this not brought to my attention, put in front of me as a great option months ago. I will head back over today to see how mom is doing with the changes.
One of my old neighbors used to say , The eighth day of the week. In place of Someday ;)
That is why I love this simple living site! The important collective wisdom shared here is so much more than the occasional online differences but we do seem to lose track of this at times.
Glad to hear that things are more manageable for you. Keep saying to yourself, "I will get through this, I will" and let us support where possible.
That is why I love this simple living site! The important collective wisdom shared here is so much more than the occasional online differences but we do seem to lose track of this at times.
Glad to hear that things are more manageable for you. Keep saying to yourself, "I will get through this, I will" and let us support where possible.
So well said.
Mom passed early this morning. I am the only one to take care of the remaining issues. I hope I can get my dad set up with enough help to take any oncoming issues off my shoulders as much as possible. Assisted living would be best, but I can't see it happening. I am asking later in week however.
So thanks all for the support.
Blackdog Lin
4-29-14, 10:21pm
ctg492 - wishing you peace and hope. My sympathies.....
My condolences as well.
Could you ask what the options are for care for your dad from someone in the know like a social worker for seniors but use exactly those words and then carefully review those options in a list with your dad. He has to make the choices which may include supportive housing or moving closer to you along with any others.
While we love our parents, at some point, we have to step back and let them live with their choices just as they did when we were young.
A dear friend who had been the neighbourhood butcher in our little community was quietly observant and thoughtful. He told me once that he had seen seniors go through different stages in their planning.
1. Talk about moving when the right time comes but sometime in the future.
2. The right time comes at around 75 years of age but the senior still feels quite capable of continuing as s/he has to date so doesn't make the move.
3. Talk about moving when things get bad enough that they have to move.
4. Don't move until in serious distress and the family has to pick up the pieces and make all the needed arrangements on short notice when their own lives are so full already.
5. Collapse and nursing homes.
Your dad may be in one of the latter stages. Don't buy into it if there is any way out as the alternative is worse for you in effort and time. Hope that helps to work your way through this.
mtnlaurel
4-29-14, 11:11pm
Thinking of you ctg.
Simplemind
4-30-14, 12:49am
I am so sorry to hear of the loss of your mother.
ctg, please accept my condolences on your mother's death. The passing of a parent is a major change in the world, or so I found it to be.
rodeosweetheart
4-30-14, 8:09am
ctg, I am so sorry for the loss of your mother.
sending warm supportive thoughts across the Pacific to you and your family, ctg. We're dealing with rapidly deteriorating health conditions with my in laws, so I am starting to get a feeling for how challenging this stage of life is.
So sorry to hear about your Mom's passing. you have my deepest condolences as I know how hard that can be. No advise on what to do about your Dad's situation though unless you can bring him to live with you and, if you are working and not able to care for him yourself, hiring a caregiver. I was fortunate to be no longer working when both my parents needed care and able to have my Mom come live with me in her final months (and was able to live at my Dad when he needed care until he passed). While it was challenging to say the least, there was also a certain ease to doing that at home myself as I was able to be at home, with my dogs and do many of the normal things I did each day.
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