View Full Version : Visits getting harder
After my Drs. appointment I stopped by the NH to check on MIL. Every time I see her I think she can't get any worse. Well, she does in a few days time.
I'm not making any sense, I know. Oh how I wish I could help her. We talks sometimes, but nobody understands what she is saying. The one word we all hear and understand is dying. She says this a lot in all the garbeled words.
I am going to stop trying so hard to understand. It kills me to not understand.
I don't think she had a clue who I was today. Hubby was there feeding her.
She ate, but it took 2 to 3 hrs to get that pureed stuff down. She doesn't always swallow and that is the reason for someone to feed her.
I am over come with sadness and I don't know how to make something positive of the whole situation.
My prayers for her is "feeling no pain". Oh how I pray for this. I won't stop going to see her no matter how hard it gets. I love her dearly. Jo
Hi Jo. This hit right in the gut for me as it is just like my aunt used to be and she stayed this way for a very long time. It killed me to see anyone (including her own daughter at times) answer back with a silly answer. I know that aunt was not understandable but cringed to see what she must be seeing. I would think what if she does understand that someone is laughing? This is NOT a laughing matter at all. Aunt would try so hard to make anyone understand and I can identify with how you are feeling Jo. And I hate it for the both of you.
I know that you will continue on with the visits. I have come to know that you have been very faithful in caring and doing all that you can and then some. I will be saying the same prayer of no pain and a hope for those elsuive things you hear about sometimes, the one where they seem to improve before they die. I surely will pray that things won't get any worse.
Tootsie
12-28-2007, 11:24 PM
No matter how garbled the speech, how absurd some of it sounds, there is some kind of attempt being made, to connect with the person listening. This needs to be respected by everyone to whom it is directed.
Even if speech has no meaning, the sound of the voice, the warmth of it's tone, the caring touch, the soft smile, all communicate something. THAT SOMETHING, is what we all crave...human caring. Sometimes, the caregivers in nursing homes, have not been trained, to respect the person, that once lived in this aging, dementia dominated body.
I do believe that when caregivers see family members coming and trying to help, they adapt that attitude to the patient, as much as humanely possible. Cheerio.
Joy, I'm sorry to bring these bad moments back to you, but I can see you know exactly what I meant. Yes, I have wanted to smack more than 1 person for their attitude and very bad taste. It is heartbreaking with no end in sight.
It is hard to believe our LO can hang on so long. I don't want her to die, I just want peace for her with no pain and if that is her going "Home", it will surely be a blessing for MIL.
You and Tootsie have been so faithful to encourage me and I want you both to know it has not gone un-noticed.You both are very special people and I count you among my dearest friends.
thank you, Jo
No matter how garbled the speech, how absurd some of it sounds, there is some kind of attempt being made, to connect with the person listening. This needs to be respected by everyone to whom it is directed.
Even if speech has no meaning, the sound of the voice, the warmth of it's tone, the caring touch, the soft smile, all communicate something. THAT SOMETHING, is what we all crave...human caring. Sometimes, the caregivers in nursing homes, have not been trained, to respect the person, that once lived in this aging, dementia dominated body.
I do believe that when caregivers see family members coming and trying to help, they adapt that attitude to the patient, as much as humanely possible. Cheerio.
Tootsie, if you want me to edit your "quote" I will, but you said some things I wanted to respond to and I forget so easy these days.:)
Your first sentence, it is so true and i may just make a small poster to put on top of her bed. She can't move, therefore no danger of trying to eat it.
I have noticed she will stop and look at a different "voice" and I believe she knows many that say she doesn't understand anything. I have tried to tell K's siblings that she DOES know them, she just can't get it out in the normal way. I tell them it take's time and much patience to get words she says. K and I both do not hurry her up, but most of the others don't want to "wait" on her. how horrible for MIL. I myself believe what you posted, Tootsie.
The staff never know when we will pop in. they Know K is very devoted to his Mom. They break thier neck to make sure she is clean, hair done and just in general grooming. they speak to her kindly. A couple of Nurses MIL will try to look toward them and it is quiet telling that they have been good to her. I sure hope so.
As I said in the post to Joy, the 2 of you have been very loving and kind to me and helpful as we have traveled down this road. I thank you both and it has made me feel much better about my last visit with MIL. As I said, I will continue to go see her and hope she will know I love her even if she doesn't know me. Who knows what she is taking in.
You can see some of the CNA's, haven't been trained to be a "people person". that is important. Mary likes for me to hold her hand, I gladly give her my hand. I do love her so.
thanks to joy and tootsie as well as others in this forum, you have helped me get through many a day.
my love, Jo
88lauren
12-30-2007, 04:11 PM
Jo,I know how you feel.Iv'e seen the nursing homes filled with all those SICK*yuk people!I can't help to feel sorry for them.I know it's hard. . . but if you are so worried,I don't know how you sleep!There is not a cure for all things but through the power of God there is.Much Love<3 ~*LJ*~
rumpled
12-30-2007, 10:01 PM
Hi Jo...
Even though you cannot "help" her in the conventional way that you want, just talking to her like normal, telling her about your day, speaking to her as if all was "right", may be comforting to her. It is really tough to be in that situation, the helplessness is there but just making your husband comfortable, being there for her, well, that is the best you can do.
My MIL also liked it when I held her hand. I also like to put lotion on her hands, arms or limbs. The lavendar ones are very soothing.
Debbie71
12-30-2007, 10:20 PM
Hi, Jo...I am 36 years old and have a grandmother that is in an alzhiemers unit here. It breaks my heart when I see her. She has pretty much been more of a mother to me than my own. She was diagnosed with dementia about 5 years ago. Then when my grandfather passed away in 2005, she went down hill fast. I have worked in the medical field for the last 17 years and have treated many other alzhiemers patients. However, I can't seem to bring myself to visit my grandmother on a regular basis. I am a very compassionate person and I am having a very hard time accepting the fact that I will never have my "Granny" back. Reading the posts above will hopefully help me be able to overcome my issue with not wanting to visit her. It's not that I don't love her...it's just that I love her too much to see her in the state she is now in.
Debbie
There is one thing that I was ever so grateful for with my aunt when she was in that nursing home for so long and it had to do with my children. They were both small and neither of them did not seem to mind visiting and taking granny, my mother, so she could visit. My son would even mention visiting aunt Zellar as he would call her too. It certainly made it easier to visit since the children were good little visitors. My mother and that older neighbor woman were such good examples for me when it came to visiting and helping the sick.
Debbie you sound like such a good and caring person and I know it has to be very hard for you to do those visits. But if grandmother has already passed into that stage of dementia where she does not really resemble your memories of grandmother, perhaps it could work for you to do the visits and try and do in in this frame of mind - like in rememberance of how your grandmother was. I think in the long run you might feel better. It is very hard. But regrets after there is nothing you can do about it has turned out to be a very hard thing for me to deal with after a loved ones' passing.
Tootsie
12-31-2007, 11:25 PM
Debbie, perhaps you have not recognized and dealt with the issue of "role reversal." You still think of your grandmother as the mother figure of your childhood. Try to re-frame your thinking.
She is no longer the grandmother that you knew. Consider yourself, the parent, and she, the child that needs you. I think that this is much easier if you have been a parent, or caregiver yourself, but not always. Some people have much more difficulty with this concept than others, and I'm not sure why.
However, try to do for her, what she did for you. When you go to visit, talk about the things that you remember doing together, even if she doesn't seem to acknowledge the words that you say. If you have photographs, mementos, or things that she might recognize, take one or two along. Are there songs, or ditties that you sang together? Music is processed in a different part of the brain than speech, and sometimes you can get a smile or chuckle when the tune is recognized.
Little things like this can warm your heart and also prevent the future sorrow that Joy speaks of. Cheerio.
Thanks for helping explain it better Tootsie. My mind just does a shortcut on things these days and I never was very good at explaining my emotions. I don't want to take away from this being Jo's thread but I feel like she is like me, so glad that someone is reaching out to us during a stressful time in their life.
I wish that not only our loved ones had people who know how to deal with people with fragile minds in nursing homes etc. but that the ones at home had enough support to help them deal with all the emotions that we have to deal with too. It was sure a new thing for me and it bewildered me that I was so unprepared to deal with it all. My first family member was my aunt that I spoke of and this went on for a very long time, about 10 years so was very bad at times. Stupid mistakes the people made and even after horrible mistakes were made in nursing home, often the hospital made mistakes like putting feeding tube in wrong place etc. I kept me horrified at the things that could happen to a human being in others care. And unfortunately at a time in my mothers life, I was so scared that I made mistakes with some of the choices I made for her as well. I just think that a person cannot have too much support when we are dealing with the well being of someone else who is incapable of doing for themselves.
Joy dear, this isn't MY thread. It belongs to everybody. I have really appreciated how you have helped me, you will never know. Yes, you remind me of you also. you have so much good to spread around.
Tootsie was right about the "feelings" and I could not have said any of that as she does. We struggle along together, that is how I see it. what you had to say about the children was so right! that was the last things Mary said before she just lost every thing. Maybe she know's and just can't get it out, like the both of us have said.
MIL continue's on her down hill sink. You wonder and worry and wonder again as to how they can live on and on, but I also know some that have. My Neuro Surgeon said his Mom was bedridden for 5 yrs. and he wondered how long she could go, surely not long. She had a massive stroke and never spoke or do anything, like she was in a coma another 5 years!! He told me I should be greatful my own mom died with-in 8 months or so after we knew she had brain cancer. It sounds cruel, but he really was right. I am thankful Mom didn't live on in that state.
Joy, please don't stop coming unless you just want to. I would hope you will stay and yes, I also wonder about you and I seem to have many things in common. Somehow I feel some comfort in that fact. I appreciate all the help and caring Tootsie sends our way.
take care and may God bless us all, Jo
Well I remember when I decided I HAD to find a place to write about it as it was spilling over into every thread I made anywhere! And I knew that where I was trying to find help for my neuropathy and pain was not the place to try and find any sort of answers for my very troubled thinking I was having and all the frustrations I was having about the many years it was taking. It was not that I minded doing what I could but I felt so limited in what I felt like what I was doing finally with my own body in so much pain at the same time and feeling like it was not enough.
Just a place to vent was wonderful. Also to express the lack of concern my brother seem to not have, yet he would talk extensively to my husband about his mother in law when they were working together! And not even ask about his own mother. It was enough to make me want to just scream at times so having a place to say ANYTHING I wanted and just releasing it was just wonderful. And probably made me be nicer in person to others when I did have to come face to face with them. I am one that does not like stress, strife anything of the sort at all and in fact hate it when I lose my temper and for sure, I NEVER want to cry in front of anyone.
That is why I am always so glad when I see new people post here. I want for them what everyone did for me here on this forum. And to not feel so all alone in dealing with it all.
Tootsie
01-03-2008, 11:17 PM
The one thing that I have found so encouraging here, is also somewhat negative. I feel that this forum is not quite as active as it was in the past. That, to me, can only mean that people in need of help, and support, are finding it in their own community, and have less need to go online to search us out.
When I first found Braintalk and this forum, I was looking for current drugs used in managing some of the behaviors that can be so difficult in Alzheimer's patients. I had already cared for, and buried my mother, but my BIL had developed symptoms and was obviously being given too much medication, and also the wrong kinds.
There was so very little information available in the 80's and NO ONE wanted to talk to me about what I needed, to care for my mother. It still makes me angry if I think about it too long. Cheerio.
I have learned so much here and I don't know what I would have done a few years back had I not found BT.
Yesterday K went to feed Mary by himself. when he got home he was very quiet and I decided I wouldn't even ask how things were. I would wait for him to speak first.
It was a long time before he did speak of his Mom. He ask if I remembered how we couldn't understand what she said? Of course I remembered, I'll never forget it. He doesn't know how guilty I feel at times because we can't bring her back home so I could take care of her.
Sorry, kinda got off on a tale for another day. He said just out of the blue she said" I am tired and I am ready to go home!" I looked at him to see if he looked alright. that has not happened to either of us. A few words now and again I will understand, but never a whole sentence. He said she said it again and she laid her head on his shoulder. He had laid his head on the gerry chair near her head. He said I just patted her head and told her I know she was tired. K was so shaken he was in tears telling me this. He does not cry, muchless in front of me or anybody else. He cried! I wanted to go over and comfort him, but I was afraid it wasn't the thing to do, but it could have been what he needed.
This disease is horrible, any kind of dementia is and I so feel for anybody that has dealt with this disease from hell!! I feel like I am 2 feet from my breaking point. Joy and Tootsie, thank you both for being here.Maybe I lean on you too much? Please tell me if I am. I am not one to get offended.
I haven't even welcomed the several new ones that have posted recently. I hope they feel welcome.
K has been right beside me and helped to do anything that was needed when my Dad died, my Mom and my oldest brother. Gosh, I miss him. I miss them all, but Ben has only been gone about 2 years. i have lost all track of time. I just wish K would let me comfort him like he has done for me.
Men can be so strange, especially anything emotional. thank you all for all the support you have given me. I was wondering if you all know how someone that only spoke in jumbled up words all of a sudden start talking normal? She went back to her usual way before he left.
Thanks for lending me your ear, my love, Jo
Daisy
01-04-2008, 11:52 PM
It is a cruel disease that robs you of the person you love and sometimes leaves you with someone you can't even recognize in that loved one's place.
I was one of the guardians for my Gram when she was in a nursing home. When she first went in we originally were told not to expect that she would live more than a few months but she rallied and lived over 2 years. In that time I went from being beloved grandaughter to hated warden. I could not believe how much dementia changed her and changed my role in her life.
We lost her this past fall and in truth I would do it all again for her because she needed someone to act on her behalf when others couldn't but the price of becoming her guardian was personally high. It took a great deal out of me to try to accept that the person who was being abusive and cruel had no more ability to control her actions than a baby does when they are struggling in your arms and reach out and hurt you. Her words were cruel and nasty but the woman I loved never, ever would have hurt me the way the dementia person did.
That's how I survived. There was Gram the woman I loved and then there was this other person I was physically responsible for caring for and I made sure she had the best of care, had contact with family, photoes and holiday celebrations, etc. but I had to restrict how much personal abuse I could take and survive.
When she went into the home we didn't know she had dementia. She had just reached the point where she needed more physical attention according to her physician. By the time she got there it was apparent and all my dreams of having her closer to the house to spend time getting closer to her and being a comfort to her in her fading years went by the by. It was truly 2 years of penance. I used to watch other families visting with their loved ones and long for those kinds of visits. We tried interventions with the social workers and they were horrified by the stuff she said and did to us because she was charming to the staff.
I have more compassion now than I used to for those you see struggling with what to do when they visit. I can only imagine what those other families thought of us when they saw us visting with Gram and we truly did try everything the nursing home suggested, believe me we were commited to making this work. I can only imagine how intimidating it can be for those who just don't know what to do or where to start, or how to figure out how to do better.
Tootsie
01-05-2008, 03:22 AM
Jo, when my mother was in the nursing home after she broke her hip, one day,she said, "I'm so grateful for all the people who take care of me." This was the first coherent sentence she had said in months. There are sometimes those very special moments when the basic, former personality can break through that terrible fog.
Daisy, there is a type of dementia called prefrontal dementia, where the specific portion of the brain that controls impulses and social control mechanisms, is impaired. These are the patients that use foul language, act out on impulse, say outrageous and embarrassing things to everyone. Some patients with Parkinson's Disease and other brain syndromes can also have pronounced personality changes. As you learned, we all do the best we can, in the time and circumstances that we find ourselves.
One thing that Jo and I both try to emphasize, is that you must take care of yourself...make time to see your friends, read a book, work on a hobby, and generally keep yourself happy. That is the only way that you can help your loved one. When you cannot function, they will only be deprived of the demonstration of your love and concern. Cheerio.
I am sorry I have not been as active this last little while. But I am just fine, this does not stress me too much at all. In fact what I recall may make it sound as if it does get to be too much but no, I just can recall what it was like all to vividly. And I made it through intact the first time with help from others and have confidence I will have help again if I need it and from the same source, here. :) So no worries, anybody say anything that needs to be said.
I agree with what Tootsie said about needing time for yourself. I was at my worst health when trying to take care of my mother and I failed at that. At that time even my closest friends were too busy for me and I had a foot ulcer that the doctor kept telling me I must stay off of or lose the foot. So having time for myself just wasn't possible it seemed. But having this place to write all of my troubles out helped. It would have helped whether I got an answer or not, but the fact that several wonderful people did give me support made all the difference in the world.
And Daisy it is good to have you join us. You have such a good way with telling things. I do not but I want to try at least. I know that we never know just what might be aroubd the corner for any of us so having a place to seek help and offer help here is such a good thing in my opinion. And I have a place in my heart for all who need to be here for whatever reason. I never want to feel as all alone as I have at times in the past. You people here are very much appreciated.
Daisy, I'm sorry you lost your Gram, but you can know in your heart you did your best for her.
Tootsie is right about taking care of the caregiver. I have to kind of "check out" and gather the strength to carry on now and again. I don't know for sure what the stats. are, but many times, especially husband and wife, the caregiver dies before the patient does.
Joy, I'm glad you came and are confortable here. you have much to share. I just misunderstood your words. I'm sorry:)
To Debbie and 88Lauren,and Daisy, welcome to Alzheimer's forum. I hope it is helpful to all.
Take care and please feel at home. Jo
rumpled
01-06-2008, 03:32 PM
Aw Jo...it is hard but sometimes though sentences do pop up. Near the end, my MIL said to my FIL, "your hands are cold - it must be cold outside" and he of course sadly took this as she was getting better but she passed shortly after that.
You should not feel so bad Joy. I am disabled myself and could not offer the care that I wanted (both my shoulders are frozen and my legs are weak) but I *look* ok so my FIL wanted me to do more but I simply could not physically and he is a bit resentful for it. Sometimes you do have to care for yourself even though it hurts your heart and others may not understand.
Daisy
01-07-2008, 12:54 PM
Daisy, I'm sorry you lost your Gram, but you can know in your heart you did your best for her.
Tootsie is right about taking care of the caregiver. I have to kind of "check out" and gather the strength to carry on now and again. I don't know for sure what the stats. are, but many times, especially husband and wife, the caregiver dies before the patient does.
Joy, I'm glad you came and are confortable here. you have much to share. I just misunderstood your words. I'm sorry:)
To Debbie and 88Lauren,and Daisy, welcome to Alzheimer's forum. I hope it is helpful to all.
Take care and please feel at home. Jo
One of my biggest fears was my Gram would outlive my Aunt. My Aunt and I made a great team but we each came at Gram's care from a different place of strength. I had the adminstrative/financial/insurance stuff and my Aunt with a medical background dealt with the doctors and the overwhelming amount of information that came from that perspective. I remembering joking with one of my adult nephews that I was going to leave Gram to him if he didn't behave himself because there were days when I was having some serious health issues that it seemed she might outlive me. It is a concern as a caregiver that not only are you responsible for their life time but you have to stay strong even when you are weak because they are so relient on you being there. It some ways it's more daunting then a child because they aren't growing up and towards adult hood, which is a positive thing when you find yourself stressed and tired over kids. When you find yourself stressed and tired and wishing they were done, you can feel such guilt because you aren't wishing for them to grow up, you realize the only way for you to be free is when they are gone.
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