caregivers …….

[patti]

How do you guys do it? I’ve been caring for my MIL going on two years now and I am just about to lose it this week. I look at what some of you have/are going through and I wonder, how are you doing it? How are you surviving? What do you do to get yourself through it? Do you every find yourself getting angry?

Besides all of the normal appts (this week it amounts to being out 3 full days) mom is so demanding of our time for everything else. I’ve spent the last two days crying at the drop of a hat and asking God how I can be so awful – she’s the one that’s sick. But I’m exhausted. I want time with my family. I want my children to know what it’s like to have a normal school week. I am trying not to be resentful but for some reason this past two days it has really hit me hard. Is this normal? Why do I feel so guilty for wanting to take care of my family when they are my first priority (except she doesn’t seem to care they are). And then I wonder how much of this is old age? She’s totally inflexible. If she wants her lawn mowed we have to drop everything and do it now. She wanted us to take my SIL to the zoo for her birthday. We couldn’t do it last week and she was miffed. So we did it today. Only so I could listen to my SIL tell me she didn’t want to be there and ruin the day for my kids by forcing us all to come home early. I’m so angry. It just goes on and on. Things that I thought I had let go of a year ago are bubbling up underneath with everything else on top of it.

She refuses to do anything to prepare my SIL for possibly being gone someday. Leaving me to deal with a mess I shouldn’t have to. She gives my SIL whatever she wants. When I told my SIL to hold my sons hand in the parking lot today because of the cars she refused to. I finally had to give her the business in order to get her to do it. This is crazy. How am I going to retrain a 48yr old girl to be sweet and kind and that she’s not the center of the universe? Just this subject alone makes me angry. I usually just avoid thinking about it, but again, this week I just can’t seem to keep it down.

How do you survive this? I know God’s grace is sufficient – but right now I’m having a hard time seeing it.

Thanks for letting me vent. I feel like I’ll explode if I don’t. I love my MIL more than anything. I’m so grateful to never be one of those people who could tell awful MIL jokes/stories. When she goes home to the Lord I’m going to fall into a little clump and just cry. How can I love someone so much and yet be so angry with them at the same time?

patti

[Sandy L]

Patti,

Why are you beating yourself up? You are a great person. Always caring about your MIL and the rest of the family. You are human and it hurts when someone is not as considerate as you. Vent all you want………. But keep being you. You are the best and this world and your husband’s family’s world is a better place because of you.

[karenkay]

Patti,
My heart goes out to you. I DO understand what you are going through. I only took care of my dad for 4 months before he died and in that time I lost 20 pounds (I was already pretty thin), spent 60-80 hours a week away from my family, and cried like a baby before falling asleep many nights. I was just worn out. My father didn’t mean to be so time consuming, he just was and everytime I promised myself that I was going to take the day off, he would call and ask me where I was. He seemed to forget I had a life with a marriage and two children who needed me, too. I am not saying my dad was selfish, he was just sick and scared and lonely and he needed me. But sometimes, I needed a break and I was blessed that my husband would help when he could.
Patti, there were nights I would bawl, not just cry and I would scream out, “why doesn’t the dear Lord give this man some rest from his suffering, and take him home to heaven?” and I know part of it was that I felt bad for my dad and part of it was that I felt bad for me!! I was crazy tired and missed my family.
Then my dear husband, who let me vent and held me close would say, “get some sleep, honey, that old sun will come up again tomorrow and God will give you the strength you need.”
Let your MIL get miffed once in a while and take care of yourself. Can someone else give you a break, even one day a week??
I was venting to a friend of mine once and I was saying how I had to go to all of these doctor appointments and this and that and she asked me, “Karen, why are you so afraid?” I share that because it led me to examine my motives for exhausting myself into a tizzy. Sometimes the motives were good, sometimes, they were out of pure guilt, and sometimes, they were out of fear of: 1) loosing control 2)loosing my dad and feeling like it was my fault or 3) letting down not only my dad, but the people who always said what a wonderful, caring daughter I was (that’s a lot of pressure sometimes!)
God bless you, Patti, you are not alone. Please remember, you are a wonderful, caring, selfless human being, but you are nevertheless, a HUMAN BEING, give yourself a break!
God love you and keep you,
Karenk

[eve]

patti

i am in the same club of caregivers – it is very stressful and taxing – between my mother and father i am at the doctors at least 3 times a week – and then i help with my 6 grandchildren – my dad who is the sicker of my parents is really a very easy patient – he does what has to be done and really is not too demanding (although he has many appointments)- my mother on the other hand is difficult – i have wanted to get live in help for them for the last 2 years (at my expense)so that the person could help with daily routines and accompany me to doctors appointments (mom can hardly walk and refuses a wheelchair) MOM REFUSES ANYONE IN HER HOUSE – so the entire burdeon in on me and my brother (and i only call on him when i am sick or away on vacation because i hate to see him miss work – he is a dentist) – do i have bouts of anger – you betcha – but then they pass and i realize i am dealing with 2 elderly people that are so set in their ways that i am not going to change them – the lesson that i hope to learn from all this is that i do not want to burdeon my children and will take all the possible means i can to make sure i have outside of family people helping me when the time comes-

so vent your anger patti – it is good for the soul – and then go ahead and do what you have been doing all along – being the best daughter-in-law a women can ask for

eve

[Engel]

Patti,
You are the most caring person I have read about-it is good to vent. My husband was dx on Jan.2006 and is on procrit and tx every 4 weeks. My Dad is 91 and healthy but lonley and my MIL is 86 and a constent complainer, my husband is her only child and she says daily, he did not get this from me, both these older people make my husband feel real bad since they are healthy and he is not. I try to be supportive and I check out everything, but I know that this illness will not go away and will only get worse. The procrit does not seem to help does anyone have another selution. Need all the help I can get.

Husband(69) RARS 1/06 Procrut abd Tx every 4 weeks

[gemloyear]

Engel, My husband was on Procrit for about 2 Yrs., it didn’t seem to do a lot of good but did hold his counts at a constant level of 9.5 -10. As his counts dropped he was switched over to Aranesp, that seemed to bring his counts up but he did have side affects from it. He developed blood clots from it in his legs, very painful. As with all meds one needs to watch for the side affects. Have you checked out Dr. List at Tampa? He is supposed to be one of the top Drs. specializing in MDS in the country. I hope you find a good Doc .
Take care, Ellie

[Neil]

Hi Patti, etal,
As people age their personality changes. They become forgetful, confused, have aches and pains, need everything done NOW, health issues become more complicated. That is the norm for most as they age. Some are fortunate and they keep their wits about them till the 90’s.
Then there are the complications added to the mix by MDS.
There is nothing anyone can really do about it! All the docs in the world cannot change the deterioration that takes place in some people. A brutal fact and one that is terribly difficult to accept.
You continue to do your best to help but it is never enough.
There are agencies for seniors that can help by providing assistance. Rides, home nursing care, financial assistance and many more. It may take a bit to search them out, but bet they are there and available to you. Take some time and look for social service agencies in your area. Call them and see what is there. It could help.

[patti]

Hi all,

I want to thank you for letting me vent. It took 48hrs and me wrestling with God in the middle of the night last night but I’m doing better today. A friend was able to help me put my finger on what was getting to me. While it won’t fix anything, sometimes it does help to know what’s causing the emotions.

There are many of you in situations so much more grave than ours and I admire how hard you have to work to care for your loved one.

Anyway, thanks again for letting me vent. Hopefully that’s the last time that’ll happen for awhile!

patti

[QQ]

Dear Patti,

I am glad that you are feeling better now. You are a great daughter-in-law and I get a lot of power from you. MDS is so unexpected that we need some time to accept something that we did not think that we could in the past. You have been doing so great all the time. I also want to thank you to share with us your valuable experience.

[Terri]

Patti, Glad your day is better, You are not alone, it is hard being the care giver. I work full time and in addition to caring for my husband. My days seem like there is never enough time and I have a great employer who understands all of the doctors visits etc.
God is my strength. I want to spend as much time with my husband as possible and make the most out of every minute, but there are days I have to push myself to keep going I get so tired.
Hang in there.
God Bless
Terri

[Lori]

Patti,
I know this is hard for you and it feels like a constant roller coaster. Sometimes I think it comes down to that our family members are afraid of dying. I worked as a nurse for 20 years and I found this with some of my most difficult patients. Letting her vent (like you need to), holding her hand and just listening can do wonders. You are an awesome person and don’t ever forget that! (I can’t help with the SIL). Hang in there and every once in a while step outside and take a deep breath for yourself – your deserve it.
Lori

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