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almost 4 years ago
fiddler said...

I understand how frustrated you must be. You certainly have done more than your share in handling this situation up to now. I had a situation where my elderly MIL had a caregiver who started to turn my MIL against me. This caregiver was getting very chummy with my MIL and trying to convince her that I was not warm and caring. My husband counseled the caregiver, which helped for a while but we ended up having to fire her. I don't know the circumstances of your caregiver problem, but you should feel proud of yourself for confronting a difficult situation. Do you or any of your siblings have power of attorney for your mother? If so, you could hire an additional caregiver even if your mom doesn't like the idea. Remember, your health and happiness is just as important as hers. Your mother needs care, but you don't have to be the one to give it. Good luck and let me know what you end up doing.

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almost 4 years ago

I can understand your frustration. After having my mother live with my family for 10 months after a stroke (that left her completely paralyzed on the right side), she is in an acceptable assisted living. As an only child I frequently visit her after a full time job. Yesterday after traveling through a snowstorm, I visited her and she would not even speak and said she wished she was dead and that I had no right to put her in a place like this. My son called her later and she hung up on him. During the past four days I have had a a son who was operated on, a cousin who had a stroke, and having a close friend that has a seriously ill daughter, I am at the point I do not even want to visit my mother. I am sure you are feeling the same. There are few support groups that can understand the day in and day out routines that are so tiring. Take some time for yourself and let your family pitch in. I rely upon the hired help. Yes it is expensive but we have to have some time for us. I do not care about the expense because I am a cancer survivor and I am thankful that I have my health. It has been four years since I have this new routine and I am very burnt out. I wish you the best.

almost 4 years ago

FOUR THOUGHTS

ONE

READ ?'s message that begins with "I understand your frustration." As a cancer survivor, s/he knows first hand the value of LIFE and taking care of oneself. Without your health you have nothing.

TWO

Also heed Fiddler's advice about having POA for your mom. You need the authority to make decisions.

THREE

NEGATIVITY in our loved ones is the worst! The burden of care grows impossible.

FOUR

I traveled 2,000 miles to move my father from his Wisconsin home of 45 years (in which my brother also lived and my sister lived nearby), to my husband's and my California home. Perhaps, your brother or sister could help care for your mom for a while.

almost 4 years ago
Diane-1 said...

Take me with you, I need to run away, too.

almost 4 years ago
mustangsally91 said...

My heart breaks for you for you have been devoted to helping with your mother's care and yet, it seems to go unappreciated. I think you are doing the right thing now by the phone calls etc. There comes a time when one has to think of themselves and not continue being taken advantage of and having to fight other siblings. I had the same kind of thing with my mother except my oldest brother lived with her and even though I was a nurse, and worked Long Term Care, he never allowed me to do anything, only he had the right. When he would tell me of a problem our mother was having and I would make suggestions, I was told to mind my business. I couldn't do that because I cared so I would make time to go in at least once a week to check on my mother. As time went by, she became more and more distant. When I'd arrive, she'd be sitting in her chair staring out the living room window. She wouldn't even acknowledge that I was there. I would say hello and go and kiss her on the cheek but she'd ignore me. It was so hard to go in and be ignored like that but I went faithfully, every week. Please, don't punish yourself for having NORMAL feelings. You have a life too. If your siblings are willing to be lead around by your mother, that is their choice. Think of all the good you did and still do for your mother and pat yourself on the back. After all the time I worked I had so many patients who never had one family member come to visit, not even on holidays. As time goes by and possibly your mother's health begins to decline, she may need a Nursing Home and believe me, that decision is so hard to make. I applaud your efforts and being able to help your mother even though you've had hurtful memories with your relationship. I hope you can be strong and continue with the choice you've made and not feel guilty. Working full time and then having to be a caregiver is so stressful and again, one needs to think of their health too. Good luck and may God bless and give you wisdom in your decisions concerning your mother.

almost 4 years ago
kimberlyrenee said...

God bless you I understand how you feel I feel for you I wish there was something I could do to help.I will keep you and your family in my prayers. Sincerely, Kimberlyrenee

almost 4 years ago
mustangsally91 said...

As a Long Term Nurse and seeing it all, may I suggest something to you? Find out if the facility where your mother is living has a Social Worker, most do. Please, they can be of so much help and you can sit down and share your concerns with him/her. When my mother had to go to a Nursing Home the last 3 months before she passed, I spoke with the Social Worker at her facility almost every time I went to visit. I found it helped me immensely for I had no one else who I can share my true feelings with. My two brothers never had been a real part of my life and they were raised to not have any respect for women. Also, many older people once put into a facility do become very bitter and angry. They've had to leave their home, their familiar surroundings and now feel insecure. Maybe if possible a long, caring talk with your mother may help. Explain to her that you never wished to see her in a facility but she needs 24 hr. care and it's something you can't give her. Let her know you're not going to abandon her, you will come and visit and you can take her out of the facility anytime for lunch or dinner if possible considering her health issues. It is so hard to see our parents aging and sometimes we feel so helpless but there is help. Check with your county aging services and do speak to the Social Worker, you'll come away feeling so much better. God bless.

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almost 4 years ago

Those who want to run away, I agree. But those who care, would be haunted while we are away. May everyone do something nice for themselves this weekend no matter how small it may be. As caregivers, we deserve to be appreciated since our parents are no longer thinking that way.

almost 4 years ago
tomkat said...

It's nice to realize we can take time for ourselves and not feel guilty. I do know the feeling of wanting to run. I really have to dig deep sometimes to keep my patience.

almost 4 years ago
Dee628 said...

Great start!! Taking time for yourself can refresh and renew you to handle the surprises of the day!! I find, as individuals, we each want a say in how we live our lives. Whenever I get frustrated, I try and imagine what the person I love is going through. When I walk in their shoes and allow myself to feel their frustration, it helps me to find perspective, regroup and talk with him about how he would like to see the situation. I know for myself, it is so easy to revert back to what I want and what would make my life easier, but when I focus on showing the person I love, love and respect... honoring their views and trying to find a happy medium. Someday, I may be in their shoes and what I do now not only communicates to my loved one, but to others in my circle. Control is an illusion. Understanding your own ideal image of the situation and your mothers ideal image of the situation, might give you a launch pad for negoiating an acceptable solution for both of you.

almost 4 years ago
gleonard said...

I am so sorry you are going through this with your mother. My mother has had Parkinson's for 24 years and we lost my dad 3 years ago so I'm feeling your pain. I also am the only child that lives in the same city she does, but I work 80 miles away. I was doing the same as you, working 8 hours a day,driving home an hour and a half and then going to her house or bringing her to mine until bed time. After 2 years of doing that I just couldn't do it anymore. My sister and I alternated weekends for the past year until Mom fell Dec 15th and went into the hospital. She now requires 24 hour care and is in a nursing home. I totally understand the "feeling guilty" part. When I am home on the weekend I will go there and sit between 6-8 hours a day. She seems angry and probably is. We have lost her in more ways than one. There were definately times she was very angry with me. Parkinson's patients get very aggitated and I am sorry to tell you that with time this gets worse. The one thing that is SO important is that your siblings be on the same page with you. If you have power of attorney (and if you don't someone needs to have it) then you need to explain to them that your mother left you to make these decisions and that you would like them to be on the same page. When the day comes that our parents are gone all we will have left is our siblings and the one thing they would hate (our parents that is) is to know their care caused us to never speak again. Have a family meeting if your mother is able involve her in it as well. Make sure that you are all in agreement with the care she is getting now and in the future. I am sorry for you and your family. I never thought we would be going through this. Our stepfather died suddenly with cancer and we had no idea just how bad she was getting. Please let me know if I can help you in anyway.

God Bless

almost 4 years ago
durdaana said...

My father had Parkinson's disease my entire childhood and I know it created a mix of feelings for me. My mother at age 93 is living with my family. We have found a good mix by having her go to a day center 3-4 afternoons a week for socialization and stimulation. This outside contact makes her time at home more pleasant and manageable. She often talks about the joy of being with people her own age. For the other hours of care we have combined our family and a live-in care giver. There are SO many things to take care of that splitting the load has made it a workable journey. We have also had a geriatric care manager be a case manager for her so that expenses for services are part of the plan that the care manager approves or initiates. This care manager has been invaluable for both my mom and me. In fact, she has helped our whole family. I have found my siblings to be completely unappreciative of the care we give, but have let that go and focus on mom and whether she is happy or not.

almost 4 years ago
M.Hartzell said...

My Mother has had parkinsons for about 6 years now. I have four siblings ,two that live on each side of Moms home and two that live near me. I am about 20 minutes from her home.My husband and I have opened our home to her and she now lives with us full time. This winter she has really gone down hill fast. I know what you are going through only my Mom is thankful she doesnt have to go to a home and has me to take care of her. My problem is, that I have the four siblings,three that say if i need anything to call, but then are always busy and cant help.I have one brother that does help when he can,(he has small children and its hard to get away).I have a full time job that requires me to work some evenings and if my husband is busy with his work that leaves me in a jam. It is like pulling teeth to get the others involved with Moms care. Since Christmas only 2 have called to see how she was doing and before that it had been months since 3 of them had any contact with her.I too am going to have to resort to paid help to help me keep my sanity.My husband gets frustrated because the others always want from us and wont return favors. I get frustrated and find myself getting "snippy" with Mom and then I feel bad.She has always been there for me and I want to be for her as well, but I need HELP....

almost 4 years ago
someonewhocares said...

One common theme in all of these posts are the pain and solitude the primary care giver feels. This is the most difficult chapter of our lives and it is something none of us have been prepared to handle, it's something we as a society just seem to continue to ignore.

I have been the primary care giver to my mom for the last few years, following a schedule as you describe...to those who have siblings who do not participate and ignite the situation, tell them to SHUT UP and stay away unless they can constructively and physically help with the situation. If it's an inconvenience to them, ask what they think it is for you!

Our primary responsibility needs to be to our immediate families (husband and children) first and foremost. In her moments of lucidity, my mother reinforces that concept to me at every opportunity. Is it easy to find that balance? NO, but you must, it's what your parents would want for you and it truly is what is best for your ailing parent. You are entitled to every emotion you are feeling...anger, sadness, impatience, all of it. You are human and your health is at risk due to the stress of the situation you are in.

Now that I've gotten the emotions out, some constructive suggestions...you need to look into getting Power of Attorney. You are the one making the decisions and should have the legal backing that goes with it. It would be better if your siblings would agree to make this the first of much needed familty meetings, but if not, you need to push for the tools that you need. The situation will not get better only worse and at a rate you cannot predict so this needs to be a priority. See a lawyer who specializes in family/elder law and they should be able to point you to agencies that can help you in putting a support structure in place...one that is best for both you and your parent.

I wish you the best and urge you to find an attorney as soon as you can to put things in motion.

almost 4 years ago
M.Hartzell said...

To someone who cares. I have been made power of attorney and I am also a co-executor of her estate.My Mom has "sold" her home to one of my brothers(never received any payment)Her name is still on the deed. It was done that way I guess so she would have a place to live.She pays the utilities, that way my brother cant say, shes not living here her stuff has to go. I buy all the groceries at my home, buy Mom things with our money and never ask for any compinsation. I was told by my oldest 2 brothers to use Moms money for anything I needed for her or to make her comfortable and in their next breaths they are calling my sister and wanting to know where all of Moms money is going. No one asks to see her bills or payment history and I dont bring it up in front of Mom because she doesnt need to be worked up over this crap. Her Dr asked me how much longer I thought I could take care of her. I said I wasnt putting her in a home. He knows the situation with my siblings and told Mom that its a shame they dont step up and help me out. I appreciate your support and just being able to tell my story.

almost 4 years ago
Footprints said...

My twin brother has had Parkinson's for 15 years. He is 62. He has care that helps him. But the family are constantly having to cover shortfalls in his bills as he has a manipulative personality. Which is common with all Parkinson's patients. Pull back from offering assistance of any kind for your mother, would be my advice. She will wear you out before you wear her out. Visit her only for a cup of tea and let those who are paid or experienced with this disease care for her. That's their job in my view, not yours as you have no experience. If you want to become involved with her care seek advice from the Parkinson's society, but it sounds to me as though you have unresolved issues with her so I would opt out completely and just visit her for a cup of tea and move on with your own life. Refuse to carry her disease rent free in your restless mind a moment longer, I say. I hope this is helpful. Peace.

over 3 years ago
momkelly2 said...

We just lost our mom to parkinsons. Power of Attorney... YES ASAP

I was incharge of moms medical.. my brother was incharge of day to day care until she fell and cracked her pelvis.

we put her in a nursing home for rehab.. they killed her..

the issue with parkinsons is they don't get that the timing of meds is critical to their care. and hour before and an hour after meds are due is conciderd on time. it didn't matter how much my mom suffered because of late meds. or how long it took to feel better.

if you can keep her with home care.. do it.... I fought a long hard battle.. one I lost in the end... it was a sad and painful end. because even in the end they thought they knew better.. and they were "following the rules" I could choke someone with those rules.

my mom suffered untold pain and horror.. I say horror.. cause as they get older and the longer the meds are delayed they have hallucinations. mom was afraid of heights.. so where did her hallucinations take her??? anywhere up high!! and scared to death.. then the pain sets in .. as the rigity sets in.. another side effect of coming off meds..

it is a sad sad sad story.. keep her home.. hier help if you can.. do what it takes not to put her in a home...

over 3 years ago
Shyla27 said...

Oh...we have some issues in common. Thank you so much for your kind words and thoughts. I know that she is getting worse with the Parkinsons...it seems that she is starting to almost choke on food and pills every once in a while. We bought her some pudding to take pills with and it seems to help. I know that if she falls or get pneumonia that it would be the begining of the end.

I am sorry for your loss.....but it sounds to me that you stepped up to the plate and did what was the best for all. You will have a gold star in heaven waiting for you.

Big hug.

over 3 years ago
Shyla27 said...

Thank you for your advice.....I am sorry for all you and your mother went through. It sounds like you cared and loved her very much. I will take your advice to heart. She can pay for round the clock care at home. You make me see that is the best way to go.

Big hug.....:)

over 3 years ago
momkelly2 said...

Thank you!! Thank you... Big hug, right back at you.

my mom said before she passed that it was okay if she went through all this... as long as they learned from her. Well they didn't and I've carried guilt and sadness for it. but if you learn.. if your mom doesn't suffer from lack of getting her meds on time... if her story saves your mom that kind of suffering.. I know my mom is smiling from heaven.. and that means a lot to me.

thank you. you don't know how much it means to me......

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