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almost 4 years ago
Mom to many said...

I am so sorry for what you are going through, especially at such a young age. I don't know how to answer your questions, but I do know this site is a wonderful place to come and vent. I am giving you a big hug. Take care!

almost 4 years ago
MamaTJ said...

I feel your frustration. It's understandable. Something life-altering is happening again to the people close to you...in this case your mother. You're still processing and learning to cope with the loss of your father. You're so young and still trying to learn who YOU are. It's a very heavy load to carry for someone of your tender years...but age is irrelevant really when dealing with these kinds of life-events.

Your anger, frustration and occasional outbursts with your mother shows that your emotions run very deep and this situation is close to your heart with very little defense in place for yourself. It suggests that a possible source of your frustration is the limited options you feel you have and the direction of your mental/emotional focus. These types of feelings are not that uncommon in situations like this, so try not to waste your energy berating yourself. Instead, focus your energy on what types of things you CAN do something about in relation to your mother's condition...has she eaten today...does she have clean clothes to wear...has she received her medication on time for the current dose. With a condition like Alzheimers it's not possible to "fix" the patient, you just have to find what works for you to live with the patient from day-to-day in such a way that preserves their dignity and independence as much as possible while it preserves your memories or that PERSON who is fading into someone else before your eyes. For your own benefit, try to incorporate this new person into the person your Mother has always been in your life. Tall order, I know...but it will help SO much with your apparent frustrations with the new daily status quo and also lessen just a little bit the trauma and almost panic you seem to be expressing about your mother "leaving you too" so to speak. Remember, SHE'S the one with the deteriorating disease, you don't have to live WITH it, just live THROUGH it and beyond it. Keep in mind that the person you're dealing with is still inside that person you're caring for and interacting with...she just can't remember that person or those around her (you) all the time anymore.

Try to keep your chin up and forgive yourself for what you cannot change at this point concerning your relationship with your deceased father. Learn from what distresses you from that sealed/completed relationship and do something different in the ongoing (if limited) relationship with your mother (due to her medical condition). You'll have the self-fulfillment of having done all you realistically could in an extremely difficult situation at some point in the future when she's no longer here...minus the avoidable regrets you described from the strained relationship with your Dad.

Best wishes and may God bless you richly! MamaTJ

almost 4 years ago
ljamick05 said...

I agree with Mama TJ. Give yourself a break, you are human and will continue to grow the rest of your life. You can't change the past but learn from it. Your Dad understands, as will your Mom. This is not a free pass for not giving your Mother better understanding. Even when she doesn't know you, talk to her, tell her you love her - some of what you say may get through on some level.

almost 4 years ago
onestruggling2 said...

I understand your regret regarding your father's illness. Quite often we feel as though we had not done enough for those we love. Sometimes we are angry with them because they are dying and we don't know how to handle the loss. I lost my father 20 years ago and a very dear aunt and uncle 47 years ago. I still think that I could have done more to show them how much I loved them, could have done more to make them more comfortable, could have done more ______________. My mother dies after a long illness in 2003. I remembered my regrets and tried my best to do all I could for my mother. There were times when I lost patience. There were times when it wasn't possible to satisfy all of her wishes. However, I have no regrets concerning the care and caring I gave my mother. I did the best I knew how. You are dealing with two very difficult diseases, Parkinson's and Alzheimer's Disease. Both involve dementia and it's difficult to predict what each day will bring. Try getting some counseling for yourself or join a support group to help you deal with your feelings of loss and abandonment. One of the most difficult things for us to do, as caretakers, is to make time for ourselves. You will find that a little of 'me time' stolen from the day to day caregiving will refresh you and make things a bit easier. Perhaps a friend or neighbor could sit with your mom to allow you to have some time off.

If not, I find it relaxes me and my husband (moderate stage Alzheimer's Disease) when I apply lotion to my husbands arms, hands, and legs. I don't know how to massage but I rub the lotion in well and talk with him while I'm doing it. Touch is very important and reassuring him that I love him and will take care of him seems to make him feel better.

When you feel yourself becoming angry with your mom think of all the times you must have angered her as a child. Unfortunately, the roles are now reversed. She can no longer function on an adult level. She may not be able to remember how to do things independently and needs the type of care and understanding from you that you needed from her as a child.

I shall pray that God gives you the strength you need to get through this crisis.

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almost 4 years ago

Hi there....you are going through a great deal and, believe me, it is awful even if you are in your forties or fifties, let alone being 20. My heart goes out to you.

I am a volunteer at Hospice. We see many family members who are having a difficult time accepting the truth of the present. We offer counseling, either with a social worker or with a chaplain, or if necessary, a referral to another professional. We also have regular support groups and even a camp for children who have lost a parent.

I am older, 58, and have lost both parents and it is not easy. Yes, there are days when you would like to be anywhere else and it can certainly cause feelings of distress, anger, resentment. It's natural and it happens and you should not blame yourself for it. Many patients, especially those with one of the forms of dementia, go through terrible periods of volatile tempers, etc. It is just part of the disease process, but oftentimes the caretaker will take the various insults personally. You need someone objective who is there to support you. It doesn't sound like you are married...a loving spouse is wonderful at this time.

Anyway, please don't blame yourself. You have done far more than most. Stay focused and take some time to get away with your friends and do something that is fun without feeling guilty. If you mom does not qualify for Hospice yet, there are other programs in most cities that will provide care for her, especially daycare programs, so that will give you a much needed break.

Even an expert tight rope walker can only do it for so long before he/she loses his focus and starts to teeter and then falls down. This is human...my wish for you is that you became less critical of yourself and remember all that you are doing. Please seek out a support network for both you and your mom.

Take care!

almost 4 years ago
blessings said...

I lost my mother yesterday morning. I understand your hurt, your anger and your feelings of helplessness and frustration. I too am beating myself up for all the should haves, could haves and wish I would haves. There were times I was very selfish and didn't spend the time I now wish I would have with her. She lived with us for a year and a half and there were times I let her sleep instead of being with her. Before she came to live with us,I was at her house 2-3 times a week taking her shopping, to doctor appointments, etc. She lost my father in 1974 and had to give up her car 6 years ago. There were days after being together from morning til night she wanted me to stay a little longer because she was lonely. But, I had things to do and places to go and after all day, I was tired. Now, I wish I would have stayed and would give anything to sit and have dinner with her just one more time. When she was here, she would repeat and repeat and repeat, she would ask to go see relatives who had gone on before, we would take her to her childhood home a state away because she wanted to go and 3 minutes into the drive home she would forget she was even there. I brought her furniture here so she would feel more at home, but she didn't recognize it. I watched her on the monitor 24 hours a day so if she awoke and needed anything I was right there to help her. I burned out and was exhausted toward the end and I hate myself for the feelings I had. I tried to never let her know how, at times I just wanted it all to end. Then I would see her sleeping and I too would forget the frustrations I just walked away from with her and cry because I loved her so much and was treating her so poorly. I did keep going back to get that one more hug, but she didn't always know it. Just before Thanksgiving when a house full of family was coming and Mom wouldn't keep her clothes on and was so lost in her own world, I had to place her in the Hospice House. I thought I would bring her home after the confusion of the holiday, but her condition slipped and I never got to do that. I wanted her here with us when she left this world, but I wasn't able to keep that ideal and I feel terrible about it. When I would go visit her, which I did daily, she wouldn't respond and yet I felt deep down she was angry with me for not having her here with me. However, she was getting much better care there than I could ever have given her here, sadly, that doesn't absoulve my guilt and saddness for the times I saw my mother peaking through the darkness. I did the best I could for her and hate myself that I couldn't have been a better daughter to a mother who was wonderful to me all the days of my life. Tomorrow, I say my final good-bye. I hope she understands and can forgive me for my faults and times I wasn't the daughter I should have been to this marvelous woman. All I can do is go forward, learn from my shortcomings and hope when we meet again, she will give me one more hug and know I loved her with all my heart and soul.

Please go give your mother a hug from me and realize you are only human and will have feelings of frustration, anger, and probably burnout, but also know you are doing the very best you can and that you are giving your mother all the care and love possible for that moment of the day and time. Maybe you could tell her know how much you hurt knowing she has to got through this and how deeply you want to help her and love her. Mothers understand what is in their children's hearts and will forgive if you aren't perfect. Give yourself the love and understanding you need to cope with what you have faced with your father and will be facing as your mother slips into another world. Yes, it is extremely sad, frightening and cruel to watch as someone you love being tourmented by thoughts that are not based in reality, but seem ever so real to them. It is one of the most difficult diseases to deal with as a child. Not only do you watch the body slowly die, but you also feel so helpless because you can not carry on a logical conversation. All you can do is try your best to help them find a segment of peace.

Please, talk to someone who can help you understand your feelings of loss with your father so you can find peace with your mother. I can only imagine the deep, deep, hurt and pain you are in and that, in turn, is causing you to lash out to the one person you love the most and care about because you don't want to lose her too, especially at your young age. My mother was 95 and I felt the same about her. I didn't want to lose her yet, I was both mentally and physically. Love your mother with all your heart and love yourself with all your heart too. If you didn't love her so much, you wouldn't hurt so much and she is fortunate to be loved so deeply by her daughter. My thoughts are with you and when you give your mother that hug, give her a kiss too and tell her you need one back. Hold her extra tight and tell her how much you love her.

almost 4 years ago

It seems to me that you could use some counseling to be able to set aside your anger with your mother that she is leaving you (and you and your mother may have other unresolved issues). I am much older than you are, old enough to acquire a little bit of wisdom and self control. I am angry with my husband for leaving me (up the creek without a paddle as it were)since I had to learn all of the executive tasks of running a family and also take on all of the tasks he had done during the past half century. But mostly, my feelings are of grief, anticipatory grief at losing him and missing out on our golden years together. You have so many more years to grieve for than I have. Dear one of Mort

almost 4 years ago

I hope you are able to forgive yourself for any transgressions. It seems to me that you have been a wonderful, even saintly daughter and caregiver. I also let my husband sleep sometimes when I could be with him but I realize and people tell me how good a job I am doing of caring for him as he slips ever more deeply into his dementia. We are devoid of family and many of our closest friends have died. A couple even have Alzheimer's. But I have developed a wonderful support group. You are part of it. Your letter is beautiful, very literate. Dear one of Mort

almost 4 years ago
SharonAnn said...

It's so interesting that you mentioned rubbing in the lotion. When my husband was in chemo he developed some skin irritation and needed ointment rubbed onto his calves and feet. when that was healed, I still kept rubbing Lubriderm on the skin to keep his skin moist and healthy. I found he loved it! Every night when he was getting ready for bed he said "Do you want to put lotion on my legs tonight?" I always said "Yes."

I realized later that he not only loved it, but more than anything else, it was intimate, we were both totally "present" to the experience, and it was a sensory feeling at a time when he had few that he could experience and enjoy.

In retrospect, I should have done more of that. Both more frequently and for longer periods of time. And just given my full attention and loving thoughts. It's the only significant thing that I would change for the months caring for him before he died.

almost 4 years ago
Gailbeverly said...

I cannot believe you are only 20 years old and are dealing with these issues. You should be very proud of yourself that you have been there for your parents at a time when you are trying to figure out your own life and who you are, and a time when people have fun and go out alot. You may and try an Alzheimers support group in your area and learn ways of dealing with those impossible behaviors of Alzheimers patients. I am in my 50's and my mother in law has Alzheimers and my 96 yr old father is living with us. My husband and I have no time together and are trying to work it out so we can have a night out a week so we don't develop those resentments. When I was 20 there is no way I could have done what you are doing. Good luck, and I will keep you in my prayers. Gail

almost 4 years ago
doodybug said...

I hope it helps to know that what you are feeling is NORMAL. I lost my Mom October 30, and have found that the single thing that helps me is knowing that EVERY SINGLE NEGATIVE FEELING you have now, guilt, such deep-stabbing mental pain, etc., is all NORMAL.
I yelled at my Mom because she would not eat enough, etc. or she wouldn't call the m.d. when she first got a cold and would end up on a ventilator in the hospital (COPD). It is just something that when those thoughts come, you have to say: STOP loudly to yourself, because you were not the cause of your father's death, it was out of your control. Try to see it more objectively, that all parents die, and try not to personalize it, those words helped me. You are doing very well. It is six weeks since my mom died, your healing time will pass. It also helps to listen to Pastor Bogle on the a.m. 630 radio starting from 11pm. most nights. He is out of Detroit and has a famous prayer show where people call in for three hours and he prays for them. Please let us know how you are doing, I will check back on you. doodybug

almost 4 years ago
arnick said...

I pray that you stay connected with people like the ones on this web-site. I believe that most of us have felt guilty because we felt that we should have or could have done more. Somedays are just going to be harder than others but by the grace of God He brings us through. As we go through we learn how to deal with situations that come up. Please connect with a group that is for caregivers,there you meet people from all walks of life,and those caring for pretty much every stage of Alzheimer's Disease.Sometimes life does not seem fair but it is what it is. At the end of the day God will give us the strength, comfort and wisdom to go on. Some times we see how blessed we are just by listening to situations that others deal with. We don't have all of the answers,but we try to help one another. It's very scarey at times,and just when you feel that you can't do it any more you remember that your loved one is scared and depressed also,because they can't figure out what's happening. Please take care of your self, if you have people that offer to help allow them to help you. It maybe as simple as going to the store for you or watching your mom while you go to the store. Some days you may just need to get away to cry, or just to have 50 feet and an hour alone,just because you are stressed to the max. Take care of your self so that you can care for your loved one. Hugs and prayers for you and this web-site.

almost 4 years ago
blacklipstick08 said...

It's hard to put into words how close to home your post hit. I am also 20 years old and my father has dementia. I am uncertain which form of dementia he has but I do know that it is slowly deteriorating every last bit of his mental and physical abilities. Since I was about 16 he has been battling with dementia. It started with a stroke and now he can't even talk and surely doesn't recognize me any more. The first time I went to visit him at the nursing home after a year of staying away and being in denial of his condition, he did not recognize me and it broke my heart into a million pieces. I completely understand your frustration and regret. It consumes you and takes you to a place that you don't want to go. All you want to feel is compassion for your parents but for some strange reason you can't. Your anger stems from the sadness your experiencing from losing your dad and now potentially your mom. At our age it is really hard because you feel so alone. Most of the people our age have healthy happy parents and have no idea what it feels like to lose a parent to a mentally debilitating disease. I always said I would rather my father have a physically debilitating disease because at least I could talk to him and understand his pain. Instead all I see is a tired, lonely man who no longer resembles my dad but a corpse. Just know that you are not alone and that is the truth. What doesn't kill us makes us stronger and you'll realize that more when your older then now when everything seems so bleak and confusing.

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