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Carenotes

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns. If you wish to respond to this letter, simple follow the link provided at the end of the letter and add your comments and thoughts to our CareNotes Board.

This Week's Carenote - 02/28/12

My mom recently moved in with my husband and me. She is 83. She is starting with dementia. She takes care of herself as far as bathing and eating. I get her bathroom and food ready and I make sure she takes her pills. I love her so much and could not stand to think of her in assisted living where they wouldnít monitor her as well. I make sure she bathes or showers daily and I encourage her to wear lipstick and earrings. I am trying to keep her vital and enjoying life.
 
My problem is, deep down inside, I feel trapped. My sister and brother have been bringing her food and my sister will take her from time to time, but I have two brothers and a sister. I asked them to each commit to one weekend a month so I could plan my weekends and we each would only lose one weekend a month. They will not commit, so I really canít plan anything. I have to ask each and every time I want to go somewhere and half the time I just donít go because I have to do it on the spur of the moment. I don't want to feel this way, but I canít help it. I needed to share this with people that understand where I am coming from. Thanks.
 
Sandy

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Name: Dee
Location: Louisiana
Date: 03/05/2012
Time: 07:46 AM

Comments

Sandy I understand your pain...currently, I am taking care of my mother with stage IV breast cancer, I have a six year old and a husband and a lot of immediate family obligations. I have two other sister and two other brothers who are not married or have any children; however, they could not adjust their lives to assist with her care. No one would make a decision when she got very ill so my husband and I decided to move her home to live with us. This is a very bad time in my life for this and everyone is just going on with their day to day lives with no obligation but to themselves. It has taken a toll on our six year old and it is affecting me tremendously mentally. I truly believe I have no more to give. My mom can take care of activities of daily living at the present time but there are times when she is very weak and the emotional stress on top of everything else is too much.


Name: Jean - Boomers 'R Heroes Support Group
Location: Philadelphia, Pa
Date: 03/01/2012
Time: 08:39 AM

Comments

Hi Sandy, This issue came up during our meeting last week. As you have opened a dialogue with your family on this issue you must continue to communicted with them your need for a break on a regular basis. In the meantime, you should some outside help through a homecare/care respite service in your area. You can book coverage for as many hours as you would need and your provider will come out to assess the needs of your mother to ensure you're matched with best person for the job. The workers are insured and you will have some time to schedule outings as you need it. I hope this gives you some hope. Oh yeah, have your siblings assist you with the payments for this help since they are not willing to commit to spending weekends with mom.


Name: Lyn
Location: Miami
Date: 02/29/2012
Time: 09:33 AM

Comments

I know how you feel. My husband has dementia and Parkinson No one knows what it's like when you need to do something, even at home. You don't do it because it's not worth the effort . I have to just pay bills or go get milk, but I don't do it because he needs to be watched and to take him with me, its just too too hard. I have decided to put him in a daycare, one day a week for a few hours. I have a woman come in and watch him. It's expensive but it is worth just a few hours. I know that no one knows what this life of being a caregiver is like, until you are one, day and night, 24/7 . My thoughts are with you. Just know that someone knows how you feel.


Name: Toni
Location: De.
Date: 02/29/2012
Time: 07:52 AM

Comments

Sounds like you need respite care.Your mother's doctor should be able to provide the information to obtain this type of help. Respite care would provide some one to stay with your mother for a few hours in your home. Also have you considered an adult day care.


Name: John
Location: Los Angeles
Date: 02/29/2012
Time: 05:30 AM

Comments

I have a very similar situation but with my wife. My request was that her sister take my wife for one day every three months. Her sister never committed and avoided the subject over six years. Both spouses are doctors and my wife is capable of independently eating and going to the bathroom. She only needs assistance batheing. My advise is to forget your siblings as possible caregivers. Don't even feel the hatred and resentment that may grow because your are so much better than them. Use your energy on positive loving tasks.


Name: Pam
Location: illinois
Date: 02/29/2012
Time: 04:27 AM

Comments

this same thing happened to my sister who was caring for her alzheimer father in law. his children, other than her husband, would not help but certainly shared in what money was left when he died. all you have to do is tell them you will be hiring someone to take care of him over a weekend getaway you plan and this will cost alot of money. see what they do then. also as a caregiver, you are entitled to a "salary" to care for him. see a lawyer, then see what your siblings do.


Name: Carla
Location: Dallas
Date: 02/28/2012
Time: 10:13 PM

Comments

The reality is that you can't make anyone do something they don't want to do. The best solution is to not worry about what they should and shouldn't be doing and take care of your needs. You need to take some time away from your mom. I've learned this the hard way and now have to work on my resentment towards my three sisters and the rest of this family of 32. It is so much easier to find respite care through DADS, your church/social network or local caregiver service.


Name: Peter
Location: Baltimore, MD
Date: 02/28/2012
Time: 04:59 PM

Comments

Sandy - just know you aren't alone. My wife's mother is the same age, with the same problems, and even the same sibling issue. There really isn't any solution, except that I admire you (as I admire my wife) for your strength and fortitude--and your determination to make things as good as they can be. I know that isn't much of a help, but just know that there must be a lot of us out there in the same predicament.


Name: Roxanna
Location: Champaign, IL
Date: 02/28/2012
Time: 12:28 PM

Comments

This is typically how it goes with siblings. Very few families in my experience all carry the load evenly. Don't ask let them know in advance (date) is their weekend for mom. If it will not work let them figure out an alternative. Stick to your plans. After having to have all the responsiblity they will be more open to working it out next time.


Name: Gwyn Wakil
Location: Lake Mary Florida
Date: 02/28/2012
Time: 12:00 PM

Comments

Dearest Sandy, take care of the care giver!!! I suggest you make a calendar and assign each on of your siblings including yourself one weekend. Explain to them, that you lessen their load and if you get sick it will require a lot more than 1 weekend every month to help!! They are responsible arrangeing a trade if they need to and making you aware of who is on duty so you have the right contact info. My 4 siblings and I do this to help our parents take care of our brother. Bless you for your love and dedication to your mother!!!


Name: Doreen T
Location: PA
Date: 02/28/2012
Time: 11:58 AM

Comments

We have lived your now life for 5 years..I asked one time for just 3 weeks over the whole year and was told ...no we have very active lives....She has never been invited or called without our intervention but when it comes to money they all want a say.My recommandation is to see an elder attorney, we waited 4 years to do this and what an eye opener.


Name: Louise
Location: Margate Florida
Date: 02/28/2012
Time: 09:39 AM

Comments

Sandy, I so understand your situation. I took on caring for my mom who was 89 at the time, which was 5 yrs ago. I have 4 brothers. They had a lot to offer via words when my mom first started living with me. My oldest son was 3 at the time and there was a lot of conflict btwn my mom and son. It's been about 6 yrs now and we are all getting along much better. I have 2 brothers who offer me respite on a regular basis. They are both retired. One lives in my state so when ever I need help he is there. My oldest brother lives in NC and visits seasonally and takes her often when he visits. Another brother who lives on minutes away would stop in periodically to visit with her, but because of his life circumstances was not able to offer me any respite. My fourth brother does nothing to help except to say thanks. My siblings eventually came around and hopefully yours will too. I always tell everyone it's their conscience they have to live with. Your life definately gets put on hold. But that part is bitter sweet, because its only temporary which means are moms will only be with us for a limited time. God Bless and I hope things improve for you. I know your mom must appreciate you.


Name: Kathy
Location: NH
Date: 02/28/2012
Time: 08:12 AM

Comments

Hi, I could feel the frustration just by reading your comments. I too, took care of a parent with dementia. My siblings were not much of a help. I tried to set up regular times they would relieve me and that didn't work so I went to settling on once every couple of months (not much relief) but that seemed to work better. As my Dad got worse I more or less told my siblings I was at the end of my rope and I needed relief and this would spur them into action. They'd take over for a day or an afternoon and at that point I'd take anything I could get in the way of help. I understand where you are coming from and I understand the need to share your feelings with people who have gone down this road. Having to ask each and everytime for help is hard, for so many reasons, but if that is the only way you can get some relief from caregiving please consider taking it. My heart goes out to you!


Name:
Location:
Date: 02/28/2012
Time: 08:11 AM

Comments

Sandy, I well understand your situation. I was daughter/caregiver to my Mom for three years. Mom had Alzheimer's disease. I also worked full-time. We had a paid caregiver during my work hours, and I took over as caregiver from 4 p.m. until 6:30 next morning, all weekends, all holidays. We had no other family. No respite care other than the paid caregiver while I worked. You need to call a family meeting, since your mother has 2 sons and 1 other daughter in addition to you. Ask for a money commitment from anyone who won't commit to a regular time commitment. That way, you can hire someone to provide respite hours, and have the money to pay for what you need. It will only get more difficult. Mom will deteriorate to a point where she will require 24/7 supervision and care. She will come to where she cannot be left alone even for a minute, for her physical and emotional safety. If your family will not provide either time or money to help with respite for you, then you need to begin the discussion about long-term care for Mom. It's blunt, but necessary. You CANNOT do it all alone. No one can. For me, my "respite" was getting out to a job 5 days a week. I loved having my Mom home with me. Would never have considered placing her in a facility. But it is simply not possible for everyone to do that. You have the luxury of family to come together in the blessing (never the "burden") of care. It's money commitment, or time commitment, or which facility is best to provide care for your Mom? Blunt advice, from someone who has "been there, done that." Good luck, Sandy.


Name: Valerie Juleson, MSW
Location: Danbury, CT
Date: 02/28/2012
Time: 07:45 AM

Comments

Dear Sandy, As a Geriatric Social Worker and the adult daughter who is also the primary caregiver, with 3 minimally involved siblings, please know I do understand. I can only offer a suggestion that worked for me. Since I was uncomfortable confronting my siblings with the unfairness of the situation. I had an other Social Worker call a family meeting and came up with a plan that allowed the siblings who can not or will not do direct assistance pay for assistance in the form of Adult Day Care/home care aides. Those who could not or would not assist with outside help were assigned a specific weekend so I could make plans for time off. Sandy-if I can offer any help it is to have someone else sit on the "hot-seat" of confronting your siblings regarding this unfair situation.


Name: Ohio
Location: Ohio
Date: 02/28/2012
Time: 07:37 AM

Comments

Is there someone you can ask from Church or a neighbor or a nursing student near by that could come in and stay with your Mom ? Contact local Senior Center for ideas or references... See what local nursing home or assisted living offers for Respite... sure it will cost a little money but at least you know she is going to be cared for..Plus look at the Social Activities she can be involved in there... Look into agencies that will have caregivers come into your home for Respite Care.. www.comfortkeepers.com If your Mom has $$ you can pay for the Care out of that...


Name: Peggy
Location: Orlando
Date: 02/28/2012
Time: 07:36 AM

Comments

Hi Sandy, I have been the caregiver of my mother who has Alzheimers. I have been doing this for almost three years now. I have no sisters, but I do have two brothers and they are the same. Although one is five hours away, the other lives in another state. I can never make plans to go away or I have to arrange for my kids to take her for the time. My brother who is five hours away can never commit and if he does, it usually results in a last minute cancellation or date/time change which screws up my plans. Now, I just don't make them anymore, but I also do not call them to give them updates or any news on Mom at all. God forbid, but when she does pass on, I would not call them to tell them. They are big boys and should know to call her on a regular basis or come see her without me having to push them or beg them to do so. In the end, it is they who have to answer for their choices.


Name: Connie
Location: Minnesota
Date: 02/28/2012
Time: 06:58 AM

Comments

Would your siblings be willing to pay for a home care agency to come in for a weekend respite for you? Or how about respite care at a local assisted living? Your area agency on aging should be able to supply you with a list of possibilities. Also, sometimes you need to ask specifically of your family members.


Name: Deb
Location: Hollywood
Date: 02/28/2012
Time: 06:39 AM

Comments

Obviously, your siblings aren't stepping up on their own, so you have to be very direct and ask ahead of time so that you can make plans. Rotate through them, repeating every time what the ideal would be (i.e. "Could you care for mom next weekend?" Pause, wait for answer. Then thank them and follow with, "Everyone is going to take one weekend a month, would you like the 2nd or 3rd one?" Give them two finite choices - good luck!!! I'm an only child, so at least you have someone that should feel obligated to share in the care.


Name:
Location:
Date: 02/28/2012
Time: 06:34 AM

Comments

we are all there. once we make the decision to be the caregiver, our time away from home will limited and short. the only sure way to get time away is to schedule it with friends, hired help, or sometimes family on a regular basis so we can count on those hours weekly. spur of the moment times away are almost an impossibility. our times away will be mostly scheduled. try to see the gift of cargiving as a privilege escorting your loved one in their most needed time. don't take anything too seriously. it's not a sentence. it's a gift you are giving.


Name:
Location:
Date: 02/28/2012
Time: 06:23 AM

Comments

I have been caring for my mother-in-law for 7 yars. she is now 90. please take it from someone that lives your life that you will have to seek help from outside your family. Contact an agency that will help with this. it will cost money, but you will at least be able to make plans. my husbands brother lives 7 houses down, and does not even pop in to see his mother. contact your local senior center and find a companion for your mom.


Name: tj
Location: wv
Date: 02/28/2012
Time: 06:17 AM

Comments

Call your local Area Agency on Aging or Senior Center, ask about home care and respite programs. Check into older adult waiver programs in your state, there may be a waiting list, put her name on the list. Check other local agencies that provide services to the elderly, the agency on aging should have a list of agencies and contact numbers.


Name: Susan Griffin
Location: South Bend, IN
Date: 02/28/2012
Time: 06:02 AM

Comments

We went through the same thing when my dad came to live with us. My one brother in town would not commit to even one night a week so that we could go out to dinner. I hope you will reconsider finding an assisted living community. Look for a licensed, not for profit. Your mother will be well cared for and have social opportunities to make friends and participate in trips and events. If my father had been able to afford it, that would have been so much better - he was a lovely man, but he got bored!!


Name: Anna
Location:
Date: 02/28/2012
Time: 05:11 AM

Comments

I've been in that situation and my solution was to hire a respite provider. I asked my siblings to pay for the service. Each contributed so I had a weekend free. While they could not or would not phyisically help, the money to give me relief helped tremendously.



 







 

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