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My mom, who will be 100 on 8/15, has been in a NH for almost two years due to a fall and fx'd hip. My husband and I go to visit her 5-7 days per week and take her out (riding, restaurants, ice cream, etc.), 3-4 times per week. Since she lives in a NH full time, am I really considered a care giver? I read the questions and answers on this forum and I see many of the same issues and situations with my own mother and the NH. We are basically the only family members who visit (she has another daughter who rarely comes and several grandsons who do come on occasion) and it really wears me down. I feel guilty when I take a day or two off per week, but dragging a 100 year old person around, sitting on public bathrooms changing undies and "assisting" her with basically everything is hard work! I am very grateful for my husband who is such a gem! Our family is lucky to have him and my mother has always considered him the son she never had!

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Answer is anytime one's time is taken up for their loved one, then yes, they absolutely are a caregiver.💜💜💜💜💜💜💜💜💜💜💜💜💜💜💝💝
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Reply to Llamalover47
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It would be 'nice' is legislation could (re)structure language for caregiving, caregivers, or whatever word is necessary to use in order for a person 'caring' for another on the receiving end to gain some tax write-offs or some kind of compensation and legal acknowledgment of the work.

Whenever you feel guilt, do a self-guided meditation seeing yourself feeling refreshed, renewal, engaged, energized when in the presence of your mom. Taking care of YOU is also a way of taking care of her. Consider your husband, too, and that he likely could use a nice 'get away' or time off the weekly routine and go out on a DATE with you. Feeling GUILT (to me) means there is inner work to do - as guilt guides us to do things we really do not want to do and/or do not feel like our self doing it.

On another note, a PRIMARY care provider (which is what I call myself) is entitled to Hospice counseling (free where I am in California) if the recipient is registered with Hospice. So, be sure to check and see about Hospice. It is possible that people who are accepted into Hospice can 'get better' to a degree they do not qualify for their services. Health conditions can change, either way. My client (I cared for her for 3-1/2 years) had Hospice for just 3-1/2 days. To say I felt grief and relief is an understatement. I felt like I was on the verge of a breakdown (even though I was working for and with her) due to her consistent and ongoing rage and tantrums. I needed this counseling service and feel very fortunate that I qualified to get it. Gena
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Reply to TouchMatters
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As JoAnn29 alluded to, what you do may not meet a legal definition of caregiver but heck yeah, you are a care giver - and a darn good one. What you say you are experiencing is normal, as you may have surmised from this forum. My sister and I share care giving for our 84 y.o. mother who has Alz (mild to moderate) and still lives at home. Even with that, it's exhausting. She is a very difficult person to deal with. We either do her shopping for her or take her with...with turns into an ordeal. She has difficulty with public bathrooms (she's short and refuses to sit on commodes - squats instead) and gets little warning when she has to go so either we scramble to find a short toilet or run her back home. We take her out to eat and do errands 4x/week. Exhausting. Yet I consider myself a caregiver. Frankly, I don't care if the opinions of others differ!

I know what I'm doing for her and it's frustrating, sometimes infuriating, and time consuming. My sister and I go to a monthly support group (if you feel the need, search your area or county for services for the aging and churches may offer groups, too) and they all feel we need to place our mother in a memory care facility. Between us, we decided we would be trading one set of burdens for another, so we will continue as we have been. She has always been a miserable person (seems to be happy being miserable with things to complain about) and a move would make things worse...and cost a lot. We will reevaluate when she needs 24-hr care that we cannot give.

Yes, Virginia, there is a Santa Claus and yes, janeyd54, you are a caregiver. Good luck to you.
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Reply to shb1964
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janeyd54 Aug 1, 2018
SHB1964, your post made me laugh when I read about the toilet scrambling. I can relate to that! LOL!! Thanks for the laugh!
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You are the care giver - there really is 2 types:
1 - is the hands-on live with them & do everything for them
2 - is the one who is the primary person for someone who is in a professional care situation due to their needs

Like you, I am the second type & once I finish this I'm off to see my mom - we shop for them, make care decisions for them, we pay their bills & are their main emotional support - just because you need to leave your home to do this doesn't mean you are not her care giver & tell anyone who says otherwise to walk a week in your shoes then say it again if they can -

To hell with the bureaucrats that say 'no' because that is only way they can manage things & we all know what a great job they have done getting the world into the terrible shape it is now - you might not be able to claim for it without doing the hands-on but you are still the caregiver
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Reply to moecam
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You are a caregiver.

Absolutely you are! You are still taking care of her and supporting her, even though the day-to-day personal care tasks are provided by the NH staff.

You visit her a lot! You take her out, and when you take her out, you have to be the one to assist her. You also are the go-between with the NH staff, and you are the one to bring up issues and are making sure they're taking care of her properly. Any stress you feel is valid. It is still stressful to do this kind of caregiving, even if the individual is in full-time care.

You are a caregiver.
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Reply to richamj
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Just filled out a form for the State Disabilities Dept for my nephew. According to them I am not a Caregiver, even though I am nephews chauffeur, handle his finances, handle his forms, and oversee to a point. To be considered a Caregiver, I must be hands on. Help him bath, toilet him, dress, groom and prepare his dinner. Since I do none of that, I am not a Caregiver.

What you do for ur Mom is Caregiving. You do way more than some. Where is Mom in her journey? Does she know you? Does she appreciate and enjoy your outings? Or, are you visiting and do these outings because they make you feel good you are doing something for Mom. My Mom was in an AL where I stopped in for a short time every day. My Moms sense of time was not there. She had no idea I had been there the day before. I washed her clothes, so I checked to make sure she was OK that way. Made sure she had enough Depends. When she went into a NH, it was further away so I cut down on my visits to every other day.
5-7 days is a lot of visiting if Mom has no idea what day or time it is. And I bet if someone came to visit, and asked if you had been there, she'd say no. Does she really enjoy the outings? Are you visiting so often to make up for the family who doesn't visit?

Please, don't feel guilty that you have a life. My Mom was only in a NH for 5 months. She had no idea where she was or that I was her daughter. I think she "knew"me but not as a daughter. It was getting harder to get Mom out and about. She could not follow directions. She was overwhelmed and ready to go back. Plus the incontinence. At 65, I just didn't have the energy for outings she could not enjoy. So I just visited. My daughter, who works in a NH, told me I didn't have to visit everyday.

It comes down to, are u doing it for her or you. Can you enjoy the visits when in the end, you r drained. I see no reason for all the visits or outings. You can step back.
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Reply to JoAnn29
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janeyd54 Aug 1, 2018
JoAnn29: My mother is still with it. When we take her out to eat she even drinks a glass of beer. She absolutely knows me and everyone else who comes to visit. I am blessed in that respect. I think if she didn't know me, I wouldn't feel so compelled to take her out. But, she still enjoys being out in the world, seeing people she knows, checking out the fashions, etc. Thank you for your insightful response!
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My mom lives in Independent housing but needs/has a live-in aide. I still consider myself a caregiver, but of course not anywhere near what the live-in does. I’m in charge of the financing. Stress that the funds are limited. Have to resolve disputes between aide and mom. Need to join her at all medical appts. Purchase and organize medicine dosages. Buy some groceries. Attend any social events at her complex that I can. Etc etc.
I am a caregiver, but fortunate that I’m not responsible for bathes, bathroom, etc.
my head would have exploded long ago.
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Reply to Cmthatcher
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Yes, You are a caregiver. I just finished a educational class for caregivers, and all are, even those who live far away, if they are doing things to support the person. You have emotions, anxiety, worry, concerns that you need support for.
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Reply to PrairieLake
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"People may convince themselves that visiting an elderly person is the same as being a 24/7 caregiver, but it is not."

Grrr!!😠 I looked after my mother at home for several years until it was impossible to manage and I reluctantly placed her in a facility, so I DO know what home care takes. I now visit my mom in the NH daily: I feed her, I speak with staff, I monitor her health and well being- I didn't dump her and run. No, it's not the same as caring for someone in the home but even then the tasks are not equally comparable - care in the home can run the gamut from simple support to 24/7 help with all ADLs to hospice and end of life care.
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Reply to cwillie
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Since you visit and take your mother out so often, you are absolutely a caregiver. You are fulfilling emotional needs that the facility isn't. And even if you weren't going so often, you would still be a care manager, yes? Doesn't the NH contact you for any issues regarding your mother?
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Reply to CTTN55
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janeyd54 Aug 1, 2018
CTTN55: Yes, I am the contact for the nursing home and her doctor. I like the way you put the "fulfilling emotional needs" portion of your response. That is exactly what I feel we do; we keep her engaged in the world.
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Hi:

If mom is in a nursing home it is not actually caregiving. People may convince themselves that visiting an elderly person is the same as being a 24/7 caregiver, but it is not.

You are though a caring person, who cares. Nothing wrong with that.

I took care of my grandfather 24/7 in my home. He typically did not want to go out to eat too often, because of the hassle and so that was not an issue.

In fact, my grandfather would have been very unhappy, if I were dragging him out to restaurants and outings that made him stressed and uncomfortable.

So.....are you sure your elder wants to go out. There are often many things to do and outdoor areas to sit in at the facility.

Why don't your siblings visit as often. My siblings did not visit often because they lived out of state or had long commutes to jobs and did not have the time to visit often.

It was my choice to be the caregiver. I was simply glad for my grandfather when they did visit. I did not expect them to visit too often because of their hectic schedules and demanding jobs.
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Reply to Heather10
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You are absolutely a caregiver. My only thing is I would caution you not to compare yourself to someone who cares for their parent at home. It is a completely different situation. While you still have the day to day worries of making sure she is safe, that her medical and financial needs are being met and you obviously visit often and care deeply, you are free to come and go as you please and take vacations etc. Doesn't make your caregiver role any less important or any less caring, just makes it different and probably much easier. That is just my opinion as someone who does care for my mother with Alzheimers at my home and works full time. While i would love to be able to travel again it's just not the time and that is the choice I feel comfortable with making.
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Reply to Nolagal
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janeyd54 Aug 1, 2018
Nolagal: God bless you for taking care of your mother at home. I see Alzheimer victims in the NH and it is NOT easy. Good luck with everything and thank you for your response.
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Absolutely, you are a caregiver!
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Reply to lynina2
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Caregiving isn't a matter of the amount of time expended or the distance. My father was hospitalized in Hawaii. I live in California. I was his caregiver by telephone. (I read your post as you and your mother were in different states, which I see NH, isn't New Hampshire, but Nursing Home.)
Self care is very important for you the caregiver. If you're worn out, you're not able to help her, let alone live your life. Also, you might consider not visiting so much. You need time off. You need to refresh. You need to be with your husband and other friends and family members. Just because mom is in NH, is 100, and has perhaps limited mobility after the broken hip, you might consider evaluation the number of all of the excursions.
I have PD, yesterday in 100 degree heat, I was out of house on errands for 2 hours. Went to the lab, Taco Bell, and got a haircut. I use a walker. I was exhausted after the trip. I have to limit the amount of outside trips. I try to do 1 errand per trip and only twice a week. Yesterday was the exception that makes me know that I must follow my rule.
Also, a wheelchair can make moving mom around a lot easier. Easier on her since she doesn't have to use up energy to get to the destination and on you, you don't have to be on high alert of fall watch.
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Reply to maryqesq1
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janeyd54 Aug 1, 2018
Maryqesq1: My mother is mostly in a wheelchair but she is walked several times a day using a walker, by the NH staff. (You are correct in that NH is nursing home; she is in CT as I am, 10 minutes from my home.) When we take her out, I try to make her walk with her walker so she will get some exercise, but depending on where we are, she may use her wheelchair. Thank you for your response.
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If you are providing love and support, you are a care giver. Please don’t forget to give care to yourself as well. As they say on the airplane, you must put your own air mask on first before you can help others.
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Reply to MelissaPA2AZ
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janeyd54 Aug 1, 2018
MelissaPA2AZ: Funny that you make the airplane analogy because I think of that quite often! Thank you for making me think of it today.
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You are a Caregiver.
Along with the times you mentioned do you not see that she is comfortable where she is.
Do you not advocate for her if you think something is wrong?
Who is at the care meetings when things are discussed? (If it is not you then you should be included)
Does the staff know you by name or at least on sight? Do you know the names of at least 3 staff persons? Do you know the names of several other residents?
If you said yes to any of these then you are a caregiver.

Side notes here...
I find it interesting that you say your Mother has another daughter...is that not your sister?
If it is a problem to take your Mom out..don't bring in a special lunch, bring in ice cream.
At some point it is safer to not go for a ride, go out to lunch. If the facility has a van or bus that they transport people in to take them to the store or go out for lunch make arrangements to join them on an outing. You will get the extra help getting into a van or bus. I used to do this often when my Husband was in Day Care, they would take the residents of the Memory Care unit for lunch on Fridays. I would look at the schedule and figure out what places he would have enjoyed and I would tell them I would go with them. I often helped with other residents as well so I was an extra set of hands and feet for the staff. At some point he just stopped cooperating getting on and off the bus so I cut those trips. Soon after that he was "kicked out" of day care at that facility as he began to require more help than they could do for someone that was not a full time resident. Ya gotta go with the flow and adapt to the ever changing needs and decline of the person you are caring for.
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Reply to Grandma1954
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janeyd54 Aug 1, 2018
Grandma1954: You are correct of course; her other daughter is my sister. However, she has been estranged from everyone in our family for years (including her own sons and grandchildren). She has been to see our mother 3 times in two years (but who's counting; me!). I know ALL of the staff by sight, and talk to all of the residents, have even bought some gifts when I know they don't have anyone. So, yes, I AM a caregiver!

Thank you for your insightful response!
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I agree with cwillie. The need to take a woman of that age on outings so frequently seems excessive. Most facilities have both indoor and outdoor spaces for visits. A walk outdoors (with a wheelchair), and bringing special treats or take out meals to her might be a better option. As a caregiver you need to be good to yourself (as no one else will), and make things easier for yourself. The fact that you’re spending time with her is the important thing.
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Reply to Susanonlyone
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You seem to really care, so yes, you are a "care" giver. Good luck and keep up the good work.
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Reply to GerryM
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You’re husband sounds like mine. He visits my dad weekly on Saturday. I see dad once a week. Frankly it’s all I can do and stay healthy. My dad is in the NH too because of a fall and is wheelchair bound. We can not take him for outings because of this and transferring issues. But yes, I’m a caregiver. My other 3 sisters live in other states. I take care of issues that arise, be they medical, financial, or other. Shop for him etc. of course you are caregiving for your mom. It is not easy and never stops even when they are in the NH. And it does get draining because at least for me, the visits are not cheering but a litany of complaints. That’s hard for anyone to cope with. Sometimes as a CG we place unrealistic expectations on ourselves such as daily visits and then if we cut back feel this unearned guilt. Do not feel guilt for taking care of yourself. Your mom wants you to have and enjoy life..it’s what God wants us to do as well. No person can care for others well if they don’t care for themselves.
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Reply to Harpcat
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Thank you all for your insightful answers. Having different thoughts and opinions certainly makes me think and puts a different spin on everything.
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Reply to janeyd54
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janeyd54, yes you are are still considered a caregiver... the clue was when you wrote "it's really wearing me down", and that you are feeling guilty if you don't visit for one day.

You are so lucky to have a husband who is helping you with this journey. Some run in the opposite direction or make excuses not to help "not my job".

When my Dad, who was in his mid 90's, moved into Independent Living [don't know why it is called "Independent" because I still had a lot of running around to do for Dad].... I use to visit every day.... then I cut that back to every other day... then to once a week when I brought over groceries and supplies. Then I realized it gave Dad more independence if I wasn't being a helicopter child.
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Reply to freqflyer
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I understand your reluctance to call yourself a “caregiver” when you read the daunting posts by people doing it 24/7 in their homes for loved ones with complicated health conditions. I felt the same way when I first found this site. But as time went on and my care taking role with my mother changed I became more comfortable considering myself a part-time care giver/life manager for her. She lives in a Memory Care facility. I visit 5 days a week. Sometimes it’s to do activities within the facility, sometimes a walk outside, or just be there to visit during meal time. The care giving comes when she needs to be toileted when I’m there - of course I assist her, or I’m checking on meds that are to be given as needed, or I’m checking with staff on sleep, meals eaten, mood - is she refusing cares from staff. The facility and staff are good but lots of things fall through the cracks. And I know my mom’s care is better because I’m a more frequent visitor. There’s also the million and one things to do outside the facility i.e. supplies, clothes, doctor appt’s, ER visits, and now consults with the Hospice Palliative Care team. Anyway, you get the picture. When you are the only family in town and presumably POA and as attentive as you are then you are giving care. You can call yourself a caregiver. IMHO
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Reply to madzeena
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Yes, you are a caregiver every time you perform a needed task to keep her comfortable mentally and emotionally. Your mom is lucky to have you and your husband. Perhaps your other sister lives far away? Could you encourage her to take a trip to see mom so you could rest a bit at home. Also, you don’t need to take mom out every visit. You could bring her treats at the NH and walk around with her on the grounds of the NH, just talk or give her a manicure or pedicure. You didn’t mention any communication problem or dementia.

A birthday celebration might be enjoyable to her this August. You know what she likes. All this is caregiving.
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Reply to HolidayEnd
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Well we certainly aren't in the trenches like all the amazing people who are caring for someone in their own home but I think we might be close to those whose parents are still living independently. We care. We devote a certain portion of our time, thoughts and energy to looking out for and coordinating the necessities for our loved ones well being - what else would you call it?

Why do you feel it is necessary to take your mother out so often if it is such a chore? It's great if she can still go out for a drive to see the outside world and maybe pick up a treat at the drive through, but staying out long enough to need public washroom seems a little excessive. Is she really pining to go out and is she appreciative after the fact or are you just doing this because you feel you should?
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