OK here is the story, both my parents are 75 years old.They live 12 miles from me, which is great.My mom has been sick a long time ,mostly being a severe diabetic. She also suffers from constant joint pain and has a extreme hard time walking. However the most difficult health problem, is that she is suffering and battling bladder cancer. In the past 18 months, she has had numerous tumors removed. She currently goes for chemo every friday for 8 weeks at a time. Recently my Dad was told he has prostate cancer, caught it very early. Ok basiscally my dad was doing some of the cleaning of their apartment, he is her main source of going to all the doctors, getting all her meds, doing the laundry. As of 5 months ago I got and pay for a cleaning lady to come in every 2 weeks. They have a small apartment in a 2 family house they own. I now do all the big food shopping every Sunday. I also then go back and cook 4 meals , this way I do not have to worry about them having to eat. My mom cannot cook nor clean anymore. Ok here comes my dilema, my mom has a nurse aide that comes everyp[day for 2 hours to help with meds , and personal hygiene. However my mom does not want the aide anymore. I do sometimes help my mom get dressed, but sadly I do not mean to be mean, but I feel embrassed to give my mom a bath.Now with that said, I could not think of ever having to do this for my dad as well. To me of course this would be more embrassing. Also while my mom is only 125lbs , she is literally dead weight. I am so sad over this, this is not the way it is suppossed to me. Can anyone offer any advice, does anyone else feel this way> When my dh broke his collar bone and when he had to have knee replacement I literally did everything for him and of course , it did not bother me one bit.I knowI would do the same for my children. But at the same time I feel terribly bad . Has anyone on the boards dealth with these circumstances, were you help to cope and give your parents a shower or bath. I am seriously getting very upset. Right now my Dad does not need help, however my mom as asked me to help her, why do I feel this way. I love my parents to death. so kindly share your thoughts or views.. Peace.. Catherine

Catherine...I so understand what you are going through. To make a very long story short, my Mom suffered with MS for over 20 years. We managed to keep her in her own home for 17 of the 20 years. She required 24 hour care for most of that time. When it came to personal hygiene I also had a difficult time. I learned to not let it bother me after a while. We were very lucky over the years to have some wonderful caretakers (as well as some awful ones). I didn't have to actually help her with showing that often, but I did often help her with bathroom duties. I also did her grocery shopping, paid her bills, helped clean, helped with feedings and helped out as much as possible. Having a parent depend on you is very stressfull. I was only 21 when my dad passed away and I became the one person that needed to make sure my mom was getting the proper care. One suggestion that I have is to check and see if there is a program through your state for the disabled and elderly that might be able to help with some at home care. I was blessed to find an agency (Alpha One) that helped partially fund my mothers at home care. This was of course, after she had spent down all the money that my dad and her had saved over the years for their retirement. They would evalate her needs once a year and allow her so many hours depending on her disability. She was allowed the top allowance (6 hours a day). It did not cover what was needed for her care, but it sure did help! She needed someone with her 24 hours a day, and refused to move in with my family. During the 6 hours allowed, we would have a CNA come in and shower her and take care of her medical needs.
Its so difficult to watch someone you love and have always admired having to depend on others for their daily care. The stress of those 20 years took a huge toll on my health, my marriage and my relationship with my own children. So much of my time was needed with helping make sure my mother was taken care of. I loved her dearly, but she was often a very difficult person to deal with. As I look back, I have no regrets, but I do wish that I had realized at the time what I was putting my own family through. This converstaion has brought up some very painful wounds, that I haven't discussed in a long time. Catherine, please take care of yourself and don't try to be everything to everyone.....

WHy dsoesn't your mom want the aide anymore? COuld it be that she doesn't like her or the way she does things?

I have cared for both of my grandparents and my Dad and I don't think I could have done it without at least some help. I didn't mind the shopping, cleaning, laundry, etc, but the personal stuff was always done by an aide or visiting nurse and we even had a live in for a while for my Dad. Personally I think it's more embarrassing for THEM to have a family member do those things?

My grandfather who was wheelchair bound just had a woman come in the morning and get him up, showered, dressed and in his chair every morning and then she left. It did take a while to find a good aide, but once they did it really helped and he looked forwrd to seeing her.

So personally I would find out the reason they don't want her and explain that it is safer and better for everyone to have someone trained in these things to continue doing them. Maybe offer to do something additional ( not that I can think of anything ELSE you could do), so it doesn't look like you are trying to get out of anything? Maybe offer to take her out to lunch once a week, something normal if you know what I mean.

And your feelings are totally normal, don't feel guilty!

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"A true friend is someone who thinks that you are a good egg even though he knows that you are slightly cracked." ~ Bernard Meltzer

Don't feel guilty! We had similar issues with my grandparents a few years back (both have since passed). Grandma was really sick and couldn't get around, etc. She was a big lady and for us trying to bathe her...well, it wasn't easy. We had a wonderful lady from Hospice come in. It took the pressure off us and Grandma preferred the Hospice lady because she felt tremendous guilt and/or shame for us having to take care of her that way. Perhaps you mom doesn't care for the aide? I have met some aides in my time and I was shocked because they were not nice people in "real life" so I can't imagine they would have a good bedside manner with people who really need their help. Personally, I would be honest with your mom. Tell her your feelings, not that you are embarrassed but that you simply cannot do more than groceries/food/whatever and she will have to have an aide come in for personal hygiene issues.

I agree with flipper when I say my family could NOT have done what we did without the help of an aide. It gave us time to help care for grandpa as well without feeling guilty about taking time away from grandma. As it was, our energy was spent

Good luck and I'll keep you in my thoughts

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Proud to say I haven't shopped at a Wal-Mart since Sept 2003

Based on the experience that I witnessed when my mother had to take care of her mom (my "Granny")---I think what you're really feeling is a sense of grief.

It's hard to see your parents age.

I don't have any answers for you. What worked for our family might not work for yours. My mom ended up placing Granny in a nursing home. Granny wanted to go, because I think she didn't want to be a burden on Mom, and I think that Granny didn't want Mom to find her dead. Granny was perfectly happy and content in the nursing home. It was a good facility. And with the exception of the nurses wanting to limit Granny's salt, I never had any problems with the home. (Granny was 93 y/o. If she hadn't died by that time because of the salt, why take it away from her at 93???).

My first suggestion would be to find out why your Mom doesn't want the Home Health Aide. Pending her reasoning, you may have a better idea of where to go with making sure your Mom and Dad get the care they need.

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Mental that one, I'm telling you. ---Ron Weasley, "Harry Potter and the Chamber of Secrets"

From experience and witnessing many friends go through this I would echo the first suggestion:

Why doesn't your mom want the aid? If there is a legitimate reason, don't stop, just get a new one. I have seen many parents not realize the enormous extent of their care. They begin to place demands on their children that could easily be managed in an easier way. That does not negate your love and care and support, but there is no reason not to use outside help when you can.
There is meals on wheels, there is the Stop N Shop Peapod service for delivering groceries, and home aids. I think you live in Suffolk County, but in Nassau there is a County bus that comes to your home and will take the elderly to and from shopping and doctors appointments.
The problem is that many elderly refuse for many reasons to use any outside service and insist on their children doing everything. I have witnessed many children do as much as they can with both taking care of their own family and their parents and grow increasingly stretched overthin and get guilty, angry, frustrated, confused and just plain exhausted.

I believe we must take care of our parents, but there is no reason not to get help when and where you can.

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Personally for mom , she is very frustrated now , with being so sick and I guess just plain simple of it all. Everyday she tells me either , she is too old and sick and wants to die and be with my brother Sonny who passed away. Or then she tells me to put her in a nursing home. As far as the aide , this is the second one she had and my mom is a bit fussy at times and just tells me, its not the same as you , meaning me her daughter would take care of her. Actually my sister in law Darlene who lives upstairs with brother and their family has helped my mom with personal hygiene. However my sister in law works 2 full times jobs. Also lately I have not been feeling well, I wrote on the boards about my health issues. I am still feeling shortness of breath and now am waiting of the results of the halter monitor. All I know so far is that I am almost a diabetic, I have very low blood pressure and am anemic. I honestly feel its all total stress. Besides my ds Thomas who among his heart problems and now all his stomach problems. LIfe jsut in general is hard not just for me for alot of people. But I do work part-time I do have 3 children 22. 20 and 16 and married and a huge home I could go on and on. Of course worrying about my parents and doing alot for them, its just taking its toll. I have to have a heart to heart conversation with my mom. Like I said I pay for the cleaning, my niece and dad do the laundry. My dad does all the doctors and visits to cvs for all her meds. I do all the food shopping and cooking and little bits of cleaning.. So omf sorry for the long vent... Also again I am embrassed I already have a hard time just getting her dressed. I guess I am just plain sad to see my mom is such a state. Thanks to all for the kind words... Peace.. CAtherine

My Mother had alzheimers. I took care of her in my home for over a year. Shortly after she came here, she became bedfast. I had to bathe her, change her diapers, clean her tail, give her enemas...you name it...I did it. At first I was uncomfortable but got over that quickly. As time passed, she became like one of my children and I took care of her like an infant. She called me Mommy. I did have home health aide come in to bathe her twice a week. That helped a lot. There were two aides that she just did not like. So, each time I called the agency and explained. They would send a different aide. After a little over a year, I had to put her in the nursing home because I was ready to collapse. It took me over a year to get back on my feet.
I am so glad that I did this. You see, my mother never really cared much for me. She raised me, took care of me, but there was no emotional nurturing. She did not know me. Before her mind totally went, she came to know me as a person and was thankful she had me as her other two children and their kids took her for everything she had and left her alone in her house. It was always my prayer that my mother know me for who I was. The pray was answered in this way. This was worth the pain and suffering, the embarrassment, the abuse (violent alzheimer spells).
But I would advise anyone to stop before they get to the point of collapse. When I put mom in the nursing home (nursing home was her greatest fear), I told her that she was going to a special care hospital because I was too sick to lift her etc. She never knew she was in the nursing home for 5 months.

It sounds like your mom is depressed and that is probably making the issue of a health care aide even harder. Do you think she is really giving the idea of having an aide a real chance, or does she know that you will give in and do what she wants. Its so difficult for all involved. Its hard on your mom, but if her health keeps declining, she will eventually have to give in and allow outside help. You need to make sure that you take care of YOU. You can't help anyone if you don't care of yourself....

ExtremeCommotion I know your feeling, well from my cousins stand point. My cousin Maria was the total caregiver to her mom when she came down with alztimers sp... sorry. Anyone like you said she did everything and anything for her mom. Like you sadly when my cousin and her 2 brothers were younger, my aunt was very mean and extremely strict and never ever told her 3 children I love you. I do however believe she did love her children, just for some people cannot show it. I say this because when she my aunt Marie became a grandmother , that all changed and all the love came spilling out. Now fast forward to 2000 when she became ill, she became the baby, and the though her mind was going she expressed so much love for my cousin right till the end. Like you said my cousin did everything for her mom, it was at these times that my aunt Marie would tell her daughter I love you. Sadly my cousin would have wished she expressed these feelings when she was a little girl. However my cousin Maria did not regret one single moment of taking caring of her mom. Btw my cousins Dad was wonderful and yet he was so blinded by the love of his wife , he stood by herside all the way as well . My aunt passed away 8-14-03 and my uncle sadly of a broken heart 10-18-04. More Sadly this past 7-16-08 my cousin at the young age of 53 died from copd a very terrible painful breathing disease. In the end I miss them all. Yes to the other poster, I realize I must take care of myself, for me and my family first, but its so hard when your mom calls you 6-8 times a day and I want to help more and feel sad when I can't. Again too all thanks for listening and for being there. I sincerely appreciate all the kind words of wisdom.. Peace.. Catherine

Your mom would probably be more embarrased than you that you have to give her a bath
It is part of life, I haven't done it for my dad, he is 60 and doing good =)
But was a fulltime caregiver for my grandmother and gave her full baths all the time
It became normal for both of us after a few times
And being able to do that for her brought us pretty close together i think. I hope my kids or grandkids will help me out when I am old like that
Suzanne

I think in the back of the people's mind that we care for, they want to mend things that they've done wrong in their life and this is a perfect opprotunity for that healing to take place. My Dad and I were not close growing up, he didn't raise me, but when he got sick and even a few months before, he started coming around more and actually participating with the grandkids. I think they know that time is running short and they need to make these chances count so they need us around. Which is why I thought maybe doing something special with your Mom would give her that special time without making it something you would dread doing?

I don't think you will ever hear of anyone really regretting that they took care of an ailing relative, but you wouoldn't want to live with " I wish I had done more".

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"A true friend is someone who thinks that you are a good egg even though he knows that you are slightly cracked." ~ Bernard Meltzer

I totally agree.

Also, as Total Commotion said, if you are the Care Giver, please be sure to remember to take care of yourself. Even if you have to have a friend or neighbor come be with your loved one while you go out for a while. If you don't take that time for yourself, you will burn out.

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Doing the right thing isn't always the same as doing the easy thing.

I had a long talk on the phone tonite with my cousin Janet, whom while we are first cousins, we are more like sisters. She went through all this with her mom my late Aunt Amelia. Her mom suffered from alztimers sp... as well. In her case she cared for her mom for 6 years at home, sometimes with just her and her husband. In the end things did get very hard to give her a bath or shower and the diapers and all. Right now I am not at the diapers stage although for my mom;s bladder cancer and not being able to hold her urine she does wear the depends, which she can change, but its hard for her to do so. Keeping in mind, my mind has all her factuties sp... My cousin expressed to me , while she was able to do it, its not for everyone... At this point right now it would be extremely hard for me, I am being honest, yet I feel really bad. I know right now I am a very good daughter to my parents and I know in my mind I am doing all the best I can, however in my heart I feel different. I have to mention as well, my mom is a big big time smoker and that really bothers me. My parents live in a tiny apartment and my mom is always cold. So when I am there say on a Sunday cooking for doing stuff I usually stay for about 6 hours, its truly hard with the smoking there is no where to go...So again when I see my parents on Sunday my cousin is coming with me and we are going to have a long talk... Hopefully things will be ok. Peace Catherine

I'm no expert but I would assume that you mom is depressed due to all her medical conditions. I would talk to her doctor and see if there are some anti-depressants or some such that she could take to help her with her mood. It would be better for her and those caring for her if she was in the best possible mood.

I am so glad that my sister and I have had discussions with our parents about caring for them in their old age. We've had discussions several times and my parents are only in their early 60's and in pretty good health overall.

Good luck to you, this is never an easy thing to do.

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