| T O P I C R E V I E W |
| sleepless reader |
Posted - Mar 24 2006 : 10:00:14 AM
I've suddenly come into the roll as garegiver for my in-laws. She has long-term lung problems and he was just taken to hospital where they found a mass on his lung. Today I check with insurance to see what is available for them and then I fill in the rest. All other family too far (or too old themselves). I'm open to any suggestions, but mostly prayers for them. Just needed to "vent"...Thanks girls!
Sharon
Life is messy. Wear your apron! |
| 21 L A T E S T R E P L I E S (Newest First) |
| sleepless reader |
Posted - Apr 24 2006 : 09:50:38 AM
All such insightful input. Thought I'd update on how things are going. M-I-L is doing pretty well. She wants to stay where she is until at least the end of summer. She understands that I can come once a week for the whole day, and my husband will also do a full day. We are starting to interview people to come in and do some light housekeeping/caregiving/cooking maybe 3 days a week. Her friends are filling in the gaps. She has even gained a few pounds, which she desperately needed to do. We go on. We learn something new every day.
Sharon
Life is messy. Wear your apron! |
| JennyWren |
Posted - Apr 21 2006 : 10:59:18 AM
Your Mom is an inspiration and wonderful model for all of us. You can only love and respect a person like that.
You are right.. Getting help makes a huge difference. You have to know your limits. For me... I knew that if I didn't do what I could, I knew myself well enough to know, I would have had a hard time with it now. My Mom was really rough on me, not a nice person to deal with most of the time. Juggling living in a hospital with a child fighting for her life, and then dealing with Mom who was mean as anyone I have ever met, and Dad who was taking rides down the halls of the retirement home on his scooter naked was about as much as anyone could deal with. I got a visiting nurse service in to help me. Without them I would have lost my mind. With the help of the service I was able to keep my Mom and Dad out of the nursing home. (just barely, and truth be told, had it gone on much longer, I would not have been able to. But Dad died soon after Marianna's chemo protocol ended.)
I guess for anyone who is going through all of this, I would tell you. That it does not last forever. Someday you will be sitting where I am, with both parents gone. I miss them all the time. Death of a parent gives so much clarity to the situation. For some reason I can understand things from their perspective so much better. I think maybe that might be God's gift to us. That clarity, because while we are in the trenches working so hard, objectivity is nearly impossible on somedays.
My Mom's last words to me as she lay dying in the emergency room were, "I'm so sorry I was so mean to you. Please know I love you". Those were the kindest words she ever said to me.
If you treat an individual as what he is, he will stay that way, but if you
treat him as if he were what he could be, he will become what he could be.
-- Goethe
www.jennywrensurbanhomestead.blogspot.com/ |
| CityCat |
Posted - Apr 21 2006 : 12:06:46 AM
This next bit is on the long and vent-y side of things. It might be better just to skip down to the supportive empathy bit at the bottom...
I watched for years as my Mom and my youngest Aunt became the primary caretakers for my Granma. It almost tore the family apart. I heard about everything from my Mom because I was there to vent to. Granma was first put into a senior's home where she had her own apartment. As she became increasingly unable to do things for herself, my Mom and my youngest Aunt were there daily, each taking a day of the week to visit and take care of her. The two older Aunts only went on Saturdays, and even then, if they knew that my mom or the youngest Aunt were going, they often didn't show up. YET it was the eldest sister that made all the care-taking decisions eventhough she had no real personal involvement.
Because she doesn't drive, my Mom would travel by public transit 1 & 1/2 hr one way to be with Granma . One of the elder Aunts who lived less than 15 minutes away went as little as possible, and only if the eldest Aunt was going to be there, and she lived less than 1/2hr away. The youngest Aunt lives almost 2hrs away by car, and visited all the time juggling that with taking care of three kids living at home.
I was so angry with my eldest Aunt who would say insulting and demeaning things to my Granma just because she was getting older and forgetting things and slowing developing dementia. When my Granma broke her hip falling out of bed, she had to be put into a full care home, and the two younger sisters continued to visit daily. I went about every other weekend. I watched my Mom help Granma go to the bathroom, helped her take baths, change clothes, help her eat meals, everything. At this point, she became confined to a wheelchair. My older Aunts would just get orderlies to do things for my Granma and force her to use her diaper eventhough she wanted to use the toilet. They would also just plunk her in front of the tv all day (she didn't understand English!). My Mom would get in huge arguments with her older siblings for not being more of a help with Granma. The power struggle was awful. And now, a few years after my Granma's death, there is an awkwardness at family get-togethers, and recently a cessation of family holiday meals...
I'm sorry to vent all that here, but I know now what I should do when the time comes and I know that when I have to take care of my parents, I can count on my sister and we will support each other through that difficult time. There will be no prideful power trips or guilt trips. There will be no uneven distribution of responsibility. Lofty goals? Perhaps, but things worth striving for.
Even from just a peripheral experience, I think I can say I understand a little of what you're going through. My only hope for all of you taking care of ailing parents is that you have the support of your families to rally around you, and please take care of yourself, because if you don't take care of yourself, how can anyone expect you to take care of someone else? And never feel guilty about getting help to take care of your parents. And getting help from outside of the family is not some kind of betrayal or dishonour. My Mom grew a lot older over just 5 years. I did what I could, but it wasn't nearly enough... For what my Mom did for those 5 years, I admire her so much! -Cat |
| grammazena |
Posted - Apr 17 2006 : 9:40:20 PM
Dear Sharon, Bless your heart. You have my sympathy. And, thank all of you ladies for sharing. Memories came back of my mother passing from complications of alzheimer and old age. So many memories. |
| JennyWren |
Posted - Apr 17 2006 : 6:02:49 PM
Hi Sharon,
First I want to say my heart just breaks for your situation, my sincerest sympathies in the passing of your father in law.
In 2000 while I was going through a horrific divorce, Marianna my daughter was diagnosed with cancer. I had already been the main caretaker of my father who was approaching the final stages of alzheimer's. My Mom was in a wheel chair and had a huge medical file all of her own. With all of this I got a crash course in health care practices, and caregiving procedures, plus had to handle my own life. It was not an easy time, I was very lucky that I had the support of my then boyfriend/now husband. He helped me keep it together. It is my sincerest hope that you have someone close to you that can listen to all of your concerns/heartaches and also let you vent. Catherine's suggestions are excellent.
My father died six weeks after Marianna finished chemo in August 2001. But I still had my Mom to worry about. Even though she was in a retirement home, I still had so much responsibility. My Mom was a severe diabetic, who had lost one leg, and had sores on her other leg. She required her dressings changed twice a day, she got to the point where she didn't want anyone else changing her dressings. On top of that, she was not always very kind. That is something all to itself, when you are changing dressings and doing personal care is one thing, but doing it for a person who is not a happy camper is a whole different thing. Takes a lot of character building resolve to deal with this one. If you ever find yourself in such a position you really need to make sure you are fully committed to the love and care of the person. Love being the operative word. When I focused on that .. I was fine. I kept my feeling sorry for myself to a minimum. Which believe it or not.. really helped me deal with my Mom when she was having a bad day. My Mom died 18 months after my Dad in January 2003. The thing I can say about the whole thing is I am proud of myself, because I did what I thought was kind and loving, any aggravation I felt, doesn't really matter anymore. All I am left with is a good feeling of knowing that my parents knew I loved them. If you ever need to vent or need advice, just email me I will be happy to talk with you.
Hang in there!
Carla...
If you treat an individual as what he is, he will stay that way, but if you
treat him as if he were what he could be, he will become what he could be.
-- Goethe
www.jennywrensurbanhomestead.blogspot.com/ |
| sleepless reader |
Posted - Apr 09 2006 : 10:14:43 PM
Thanks for the advice Michelle. Right now the concept of "time for myself" seems like a joke. My husband is in as deep as I am. I know we'll get through this. We'll have to fine a facility for his mom very quickly. We live about an hour away, but the rest of the family are located out of state. Onward!
Sharon
Life is messy. Wear your apron! |
| MichelleTN |
Posted - Apr 09 2006 : 5:00:24 PM
And I should add if there are other family members in the area give them responsibilities too, as usually and in my case the rest of the family sat back because they thought I was "doing a good job" when they could avae done things for him to lift the load some but I was waiting for them to offer when I should have told them what they could be doing for him.
Hugs, Michelle
http://tangledthreadsandknottedyarn.blogspot.com/ |
| MichelleTN |
Posted - Apr 09 2006 : 4:56:54 PM
Hi!
I have not read everyone reply so may just be repeating everything you have been told but from my own experience, I have been full caretake for my grandfather seven years now (after my grandmother died). Don't forget to make time for your self. I about had a break down a year ago and put grandpa in the nursing home. His demands and requests kept me hopping 24/7, until one day I realized his happiness was not my "job", he is a very unhappy, mean person, and for some reason he played this poor poor me trip on me so I constantly was trying this and that to make him happy, he even called me "ma" so I become like a mom to him, but one day six years later I realized every moment I was worrying about if he was mad or if he was happy that day and it was too much. I woke up and realized my real job and husband needed my attention too and that is when I made the hardest decision of my life and moved him to the nursing home as his health and emotional issues were more than I could handle anymore. I went through him getting hit by a car in front of the mail box because he would not wait on me to get paper, finding him unconscenince 3 times and then in a coma a week at a time from not leaving his oxygen on, fire alarm going where dish towel fell into oven while he was making pizza, and him just sitting there watching TV, so with him not having a voice box to speak, two hearing aids, legally blind and the will of a mule it was quite a force to deal with.
So, don't feel guilty if they become more than you can handle..I had a hard time forgiving myself for letting him go to the nursing home but I had to get my life back or go insane. And now I still wash his clothes, take him oodles of his favorite snacks, take him to eat Mexixan once a week but the worry of his safety is not in the hands of the professionals and it is such a relief really.
I will confess I went from the first couple years of being so happy to do everything possible to make him happy, felt good about sacrificing my own wants for his, getting up at 5 so I could take him to breakfast before I went to work even though I would have rather slept until a 6 to several years later resenting all his demands and wants. Let me tell you it has been a roll a coaster of emotions this past 7 years.
I hope you have a good support system, as the caretaking can by wonderful and exhausting.
Hugs to you, Michelle
http://tangledthreadsandknottedyarn.blogspot.com/ |
| sleepless reader |
Posted - Apr 08 2006 : 6:51:41 PM
Thanks. Hugs to you both.
Sharon
Life is messy. Wear your apron! |
| Libbie |
Posted - Apr 08 2006 : 09:45:13 AM
Oh, Sharon - I couldn't express it better than Catherine did - my thoughts and love are with you and your family. What kind people you and yours are - your mother-in-law I know will appreciate your looking after her decision-making during this hard time. I know from experience that nothing said can really relieve what you are feeling, but please know that we are thinking of you and sending love, comfort and hugs...
XOXO, Libbie
"Nothing is worth more than this day." - Goethe |
| cajungal |
Posted - Apr 07 2006 : 7:58:50 PM
Sharon, precious Sharon, my eyes are filled with tears and my heart is heavy for you, your husband and the rest of the family. We will remain in prayer for y'all. Gosh, things can happen so fast.
I wanted so badly to be with Nanny when she passed. In the end days she was unconscious and I stayed by her side. The nurses told me that almost always the loved one will hold on and not pass until others are gone. Perhaps someone will slip out the room for a cup of coffee and return to find their loved one is gone....just like you said.....waiting for family to be away. This is also what my Nanny did.
After a 24 hour sit, I needed to give my girls a break from the grief and go get some fresh air. I kissed Nanny and told her I'd be back in a little while. I took the girls horse riding. The day was beautiful, warm sun, cool breeze, nature calm. I just walked around in the woods breathing the fresh air. I decided I wanted to go spend the night again with Nanny. I called the nurse from my cell phone. It took her a couple of minutes to come to the phone. She picked up. I told her I was coming to stay and please get a cot out for me. She told me that the reason why she did not come to the phone quickly was because she was with Nanny as she died. Nanny was leaving this world at the very moment I was making the phone call.
Sharon, take care of yourself and make sure your husband gets care, too. The next several days will be difficult and exhausting. So many people are going to want to hug you and tell you how much they loved your father-in-law. It's so hard to keep smiling and thanking everyone.....your cheeks will start to hurt. All those people can be quite annoying.....just know they are trying to give you comfort.
Please come back and share your thoughts. Also, come back and continue to share about your mother-in-law. We will all keep praying for comfort and peace.
Blessings
Catherine
One of the best compliments from one of my daughters: "Moma, you smell good...like dirt." |
| sleepless reader |
Posted - Apr 07 2006 : 2:06:04 PM
Dear Catherine and Libbie,
My father-in-law passed away in his sleep at the Hospice ICCu facility yesterday in the wee hours of the morning. While no family members were there, his nurse was and told us he was very comfortable and just passed as he slept. I think he was waiting to be away from the family, to go privately. That was the kind of person he was. I cannot tell you how much you kind words have meant to me. Onward now to the next challenge of taking care of my mother-in-law. We don't want her to make any hasty decisions, perhaps to stay with her daughter over the summer and then come back to some type of semi-care facility. Keep us in your prayers!
Sharon
PS Catherine, I'm glad you had the memories of your Nanny. How special she must have been to still be such a part of you.
Life is messy. Wear your apron! |
| cajungal |
Posted - Apr 06 2006 : 05:44:19 AM
Sharon, it is tough. Hospice and other nursing type care can be very helpful....don't let any guilt set in. Your loved one may need periodic turning, bed sore care, 'diaper' change, bed pan help, nasal suctioning, feeding, etc.... The turning and bed pan help can be difficult to do alone because of needing the strength to handle their weight.
Another benefit of hospice is that you give them all the funeral information and they handle everything for you...the contacting of the funeral home, the transfer, etc....Just one less stress to deal with in such an emotional time.
Yesterday was the 2 year anniversary of my Nanny's passing. I read through the journal that I kept at that time and listened to about 2 hours of recorded conversations with her. Laughter and tears filled my heart as I heard her sharp "tell it like it is" voice. I closed my eyes and I saw the 'movie' of those very conversations in my mind.
The heartache is still so fresh. Here I am, 38, and I feel like a wounded child. Nanny was my everything my whole life. We were connected by some invisible thread and it has been quite hard to have that thread broken. As hard as it was to care for her ailing body in her last year, I wouldn't trade that time for anything.
I think that even if a caregiving situation is one with tense relationships, it can be a wonderful time of reconciliation and bonding. The road is hard but leads to such peace.
I may come back later and share an entry from the journal. I'm getting weepy again.
Blessings
Catherine
One of the best compliments from one of my daughters: "Moma, you smell good...like dirt." |
| sleepless reader |
Posted - Apr 01 2006 : 6:28:39 PM
I love the recorder idea too! I shared some of your ideas with my sis-in-law (she's here for about two weeks) And she liked them too. Only trouble is they keep changing the meds about every other day!!!At any rate, we can make a sheet of all the "personal" data. My mother-in-law is very concerned about my husband and I splitting the weeks ahead (after his sis leaves) and she's thinking that at that point she may want to send him to the hospice. Part of me (the small, selfish part) finds this a good idea because it lessens the care, work missed, school missed and driving for my husband and I. The other part of me doesn't want her to do this "for us" because I know what it means for her to have the time with him in their home. It will also be a task to get her there every day for an hour to visit because of her limits. Oh, girls, this is so tough....
Sharon
Life is messy. Wear your apron! |
| Libbie |
Posted - Mar 31 2006 : 09:21:05 AM
Catherine - I just LOVE the voice recorder idea. I'm going to do that with my grandmother and parents...what a treasure those recordings must be...
XOXO, Libbie
"Nothing is worth more than this day." - Goethe |
| cajungal |
Posted - Mar 31 2006 : 05:04:03 AM
Good morning
Sharon and Diane, I hope you're both rested today.
The temptation to eat sugary junk foods may hang overhead quite often. Try not to indulge. The junk food does make you feel good for a little bit and soothes your emotions but later you'll feel awful and won't think straight. Try to eat healthy on the days you're giving the most care and then junk out on the day you have off. (if you get a day off....if not, junk out at night)
Junk food can be a great comfort. My junks of choice during the care of my grandmother were cheese nachos with lots of jalapenos, Oreo cookies dipped in milk, and fudge brownies. YUM!
The notebook I made was from a 1 inch binder with a clear view pocket on the front. I kept clear sheet protectors inside it to place slips of paper and doctor's business cards. Quite often, the nurses would put me off and I would call the Dr. directly and get some action.
This could be a great time for y'all to get stories and family history. Ya' know, just sittin' around and talkin'.
I used a digital recorder. It's about the size of a cell phone and comes with the computer cable so you can upload the recordings to the computer and then burn a cd. I purchased mine at Office Depot for around $70. There were many to choose from....some that use the microcassettes and some that would record for days. The prices were quite varied, too. The $70 was about the middle of the road, no cassette, several different "folders" to create for recording and easy to upload to the computer. They're marketed as lecture recorders....like for college kids.
I am so glad that I have Nanny's voice recorded. I'd let it just record while we sat and had coffee together....so many funny stories. Stories that would be gone from my history if I hadn't recorded them. So precious.
Hang in there. I know it can be frustrating to feel like you're losing a huge chunk of your own life. But, this time is but a drop in a bucket and you will not regret the time you've given to the care of your loved ones.
Blessings
Catherine
One of the best compliments from one of my daughters: "Moma, you smell good...like dirt." |
| Fabulous Farm Femmes |
Posted - Mar 31 2006 : 12:41:17 AM
GREAT advice, Catherine.The notebook idea and the sheet to hand to paramedics are two ideas that hadn't occured to me yet (we are just starting this phase with my mom)but I am instituting it tomorrow!
And Sharon, I know how you feel and am with you in spirit. I have helped care for both inlaws and it is almost tougher.Hang in there. |
| sleepless reader |
Posted - Mar 30 2006 : 10:39:41 PM
Oh Catherine, thank you so much for these helpful "hints"! I have been carrying around a clipboard, but like the notebook idea better. I apperciate all you have said. Yes, it's gloomy, but better to enter with open eyes and be prepared. Tomorrow my sis-in-law and I meet with the hospice social worker and mom to see where we go after all of this.
Again, thank you.
Sharon
Life is messy. Wear your apron! |
| cajungal |
Posted - Mar 30 2006 : 04:49:30 AM
Good Mornin' Sharon
I hope you are doing well today. Caregiving is an exhausting and wonderful experience all at the same time. Please, come her to vent whenever you need to. You need the release.
I do have some suggestions that may help. I admit, they're not all warm and fuzzy. They're just hard facts to be dealt with.
When I cared for my grandmother, I made myself a notebook for keeping track of everything going on with her.....doctor's advice, medicines, insurance, copies of the will and directives, eating, bowel movements, blood pressure, etc.....
It was so very helpful. I kept it with me at all times and it became a resource I wouldn't have been able to cope without. I also found that the doctors and nurses treated me with a bit more respect and trust because they saw my involvment. I was able to help facilitate care for her because I sort of "reported in" with the doctors and nurses. The docs also didn't have to search through the pages of the chart to find information....I was able to catch them up on everything.
My grandmother was also a bit hard of hearing, so I let her read the notes to understand what was going on because she never really did understand what was said. I didn't hide anything from her....she read everything....even the bad news. But, it helped her not be so fearful.
I started this notebook a year before she entered the hospital for the last time. My first experience with the ambulance and the hospital was awful because I couldn't answer any of their questions and my grandmother was unconcious and couldn't either. During that next year we had about 7 more 911 calls, ambulance rides and long hospital stays.
When the paramedics would arrive I was ready for all the questions. In fact, I kept a "fact sheet" ready to hand them and the doctors. It had my contact info., her name, address, birthdate, ss#, insurance info., blood type, list of ailments, list of all meds and doses, and most recent medical visit information. I kept the fact sheet updated often because meds would change as diagnoses would change. This fact sheet really helped her care be more swift. The paramedics loved it because it answered all the questions they had to fill out in their paperwork. They could administer care immediately and fill in the blanks on the paper on the ride to the hospital.
I kept several copies of the fact sheet so they could be handed out. The first time I used the sheet, it was the only one I had and I was so worried about getting it back from the paramedic so I could have it. So, I made more copies. Honey, I tell ya' it was a learning experience the whole time.
About directives, living wills, etc... I suggest that you and your husband make sure you have very clear instructions from his mom and dad as to what their wishes are. There needs to be a copy of these forms in the chart, in your notebook and an extra set to hand out in an emergency. The originals need to be kept safe.
Get a medical power of attorney....you will be allowed to sign off on treatments when they are not able to. Get a financial power of attorney.......you will be able to handle financial affairs with little problems. Fill out a DNR form....Do Not Resusitate....it has a checklist of what can be done and what cannot be done to the patient in the event of imminent death. Keep copies of that in the notebook, too.
Educate yourself and hubby's parents on all the terms relating to 'life support'. Then have them be very clear about what they want and don't want. For example, tpn is liquid nutrition given by I.V. It is defined as life support. I had an awful decision to make about having it administered to my grandmother or withholding it. What was awful was that 3 of our doctors said it was under the definition and we should not give it to her. 3 other doctors said it was not completely under those definitions as a respirator would be....and that I wouldn't want her to starve to death. It was also awful because even in the medical community there will be differences of opinion relating to things that you think you have made decisions on.
I say all of that just to let you know ahead of time what to be prepared for. It is all very hard...very very hard. But, in the end, because of the DNR and the living will and etc....., I was able to make loving and caring decisions for Nanny when she was unable to.
I feel badly that all of that advice is so gloomy. The up side is that I count that last year with my grandmother as the best in my life. We talked and shared and laughed and cried and walked down memory lane together. I wouldn't trade it for anything. This time in your life, your husband's life and in his mom and dad's life can be very rewarding and fulfilling because of the bond that caregiving brings.
Blessings
Catherine
One of the best compliments from one of my daughters: "Moma, you smell good...like dirt." |
| sleepless reader |
Posted - Mar 24 2006 : 8:18:50 PM
Thanks Libbie. I will try and remember to find some time from caregiving, but right now it's just me, my husband and our son. We have to see what comes of my father-in-laws biopsy and see where to go from there before I can really even inquire as to home health options. I need to know what we're up against first. Thanks for your support.
Sh
Life is messy. Wear your apron! |
| Libbie |
Posted - Mar 24 2006 : 2:41:57 PM
Oh, Sharon - I am so sorry to hear about the health of your in-laws. Caregiving can be such a kind, generous and physically, mentally and emotionally taxing role - please remember that if you don't take care of yourself, you won't be able to take care of anybody else. I know from my mother's experience as a caregiver that there are many home health options available - be sure to check around; they can really change your responsibilities in a good way.
That is such a kind and generous thing that you are willing to do.
XOXO, Libbie
"Nothing is worth more than this day." - Goethe |
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