Update on my grandmother

[Tigger 76]

Hi all,

I thought I would post an update on how things have been going with my grandmother, since it has been awhile since I posted here.

My grandmother was able to stay in the assisted living facility until October of last year when we finally had to make a move to the nursing facility. She adjusted to the nursing facility better than I thought she would, when she first got there she would roll around the building and talk with everyone although she couldn't remember who they were she still enjoyed talking to them.

Over the past six months however, things have gradually gotten worse she is no longer walking, she is not able to push our own chair, her speech has gotten much harder to understand, she has had issues with repeated infections, and has also had issues with bedsores because she sits in one position for too long. The bedsore issue is being dealt with and she seems to be recovering from that issue, because I pushed for her to get a different type of seat cushions for her wheelchair which seems to be helping some what.

The nursing facility is one of the better nursing facilities in town but I still have some serious issues with certain things they are doing and not doing for her, in my opinion they do not change her often enough (this issue is currently being addressed but it's still very annoying). The other issue I have with the nursing facility is on the staff can be very rude and condescending toward her, again this is only my opinion.

I do not care if she has severe Alzheimer's or not she is still a human being that needs to be treated with dignity and respect. I have addressed this issue with my mom and the staff at the nursing home and the situation and has improved somewhat. I guess I have a unique perspective on the situation because of my own disability. The last time I went to visit it was quite obvious that seem to be changed so I went and found the nurse's aide and told her as much, her response to me was "Honey I just checked her", I said "I do not care if you just checked her she needs to be changed again". To make a long story short this person finally came in and help me change her. I was very upset about the way the person talk to me (I have cerebral palsy and use crutches or a wheelchair but there is absolutely nothing wrong with my brain.) Does anyone else think that person's comment was out of line? Sorry to ramble but the whole situation was very frustrating.

I am going to go see my grandmother in a couple of days, I enjoy seeing her but the visits have gotten so much harder since most of the time she does not know who I am anymore. I know that is part of the disease process but it doesn't make it any easier. I have tried to talk my mother about this but as usual she does not want to talk about it. My goal at this point is to do everything I can to make our life as comfortable as possible for what time she has left.

My problem is I love her very much but it is so hard to see her like this I almost do not want to visit anymore. I know that sounds horrible but it is the way I feel. Does anyone have any advice on how I can make the visits a little easier on me and her, because right now I am having a hard time dealing with the whole mess?

Any advice would be greatly appreciated

[joy]

Hi Cindy. I was hoping that things were going well as it has been some time since we heard from you or else I just missed a post. It is a shame that she developed the sores as it sounded as if she was enjoying being around people more than some do.

I agree that they should treat everyone with respect no matter how many times they may have to repeat something. I also hope you can continue to visit. I horrifies me to think how "lax" they might get if no one visits!!!

I admire you for taking the responsibility to keep check on your grandmother. It is obvious you love her a great deal and I know it does pain you to have to visit and see her this way. My only advice is to try and remember her in a better time not only before your visits but as soon as possible after. When my aunt was in a nursing home it was awfully hard after each and every visit. Not only did it depress me to see my aunt that way, I took my mother each time and I had to see what it did to her to see her sister in such a bad way.

But it is good for us to be strong and make those visits to our loved ones. Please continue to update us and let us offer our support as best we can.

I feel I am not much help and am not as qualified as some but I assure you I do care. As for that remark "I just checked her" - all uncalled for. Sounds way to pat an answer for me! The right one is I'll get right to her as soon as possible. Try to visit at different times. Your grandmother must have been a good one and I am sure you are living up to her standards. That's always a good thing to see passed on to younger family members. Take care.

[Tigger 76]

Joy,

Thank you for your replay. I am going to keep this short for tonight because I need to get to bed. I am not sure if this makes scense but it even hard to update because then I have deal with my feelings and that is very hard for me to do. I am going to try to post here more often because it does help.

I will update more tomarrow need to get to bed.

[joy]

I understand. I hope you had a restful night. There are more caring people that usually post here but they too are in the same situation as you are. My days of being caregiver are over for now and hopefully will stay that way. I have more time but less helpful knowledge to share. Just update us on how you are doing if you get a chance.

I'm that same way about doctor's visits for myself. It makes me have to stop and think about my situation and I don't like to really do that. I might never truly cry at home (well infrequently) but just let me have had several bad nights before and then have to tell the doctor how I truly am doing , and then the tears will flow. Then they think your are depressed and want to medicate! Can't win in the emotional deprartment sometimes can we?

You'll be in our thoughts and prayers.

[Tootsie]

Hi Cindy,
I have a few comments and suggestions that you might find helpful, or at least help you view your grandmother's situation differently.

The comment by the aide that, "I just checked her," was made because when you said your grandmother needed to be changed, it implied that somehow she wasn't doing her job. Whether she was, or wasn't isn't the issue. It was important to HER that no one think she wasn't competent. Most of the people, working directly with patients in a nursing home have relatively little education, do not have other employment options, may speak poor English, and are super sensitive about anything perceived as criticism.

This also applies to their attitude about caring for someone with a condition that they do not understand. Nursing aides are inclined to take all behaviors personally. The patient is doing something to annoy them, or make more work for them, ON PURPOSE. Some nursing homes, do offer in-service education for their staff, but this is expensive, difficult to coordinate with days off, different shifts, etc. As we know, behaviors can vary. What a patient can handle and do one day, is not what may be within their capability, another day. The aides cannot deal with this. They respond in rude and indifferent manners.

It may help you to deal with your grandmother's condition if you think in terms of "role reversal." You must abandon your role as granddaughter and now assume the role of caregiver. Your grandmother is now YOUR dependent and loved child. If you are young, and have never had children of your own this is more difficult. Some people struggle with this concept and others just move into it smoothly and with little difficulty. My cousin reacted as the former, while I assumed the latter, with our mothers.

While your grandmother may not know your name, on some level, she knows that you are someone important to her. Do you remember any songs or stories that she told you as you were growing up? Sing them to her, or talk to her about them, even if she does not respond. My mother didn't call me by name anymore, but when I went to visit her she would clap her hands and smile showing her joy at seeing me. That said more than words.

Later on, when she hadn't said an understandable or comprehendible sentence in months, and was in a nursing home after surgery for a broken hip, she managed to say, slowly, and with effort, "I'm so very grateful for all the people who take care of me." The nurse patted her hand. I cried. It was so typical of her. Keep in mind that you visit your grandmother for a variety of reasons. One is to remind the staff that she is a loved and valuable part of your family. Another is to fulfill your commitment to her. Still another is to avoid feeling guilty after she dies. But most of all, you visit so SHE knows, on some level, that she is loved. Hang in there. Cheerio.

[Jo6]

Hello Tigger. It is good to see you. You take care of you and if you see things out of way, go to thetop dog, let them know what is happening.

Take care, jo

[Daisy]

One thing to find out is how you can get more involved with finding out about the level of care your gram is getting and how to work more closely with the staff about getting the care you feel she needs. My Aunt and I were the primary care givers for my Gram and our nursing home had regular meetings we needed to attend at which point we were given updates. We also had a number to contact the director of nursing if we felt there were issues that weren't being addressed or handled appropriatly.

I found the nursing staff definitly taught us a great deal about how to access the services and make requests when we wanted or needed something from the staff. I'll be honest functioning in a nursing home environment wasn't my speciality so it was something I did have to learn and learning how to approach people in a way they were comfortable with got me far more than not doing so.

Another thing this home offered was a group that met monthly to discuss care giver issues. We only had the chance to go a few times as it was a new program when my Gram was at the end of her time there. However, it might be something to discuss with the director. It helped to talk with the social worker there and other families who were experiencing many of the same problems we were.

As for your Mom, remember that you can't direct anyone's path but your own. I was one of my Gram's primary care givers because my Mom walked away and left it as my Aunt's responsibility and I couldn't do that to her. I couldn't change my Mom's path, I could only direct my own towards what I felt I could do towards making my Gram's time there as comfortable as we could make it.

[Jo6]

Thinking about you, Cindy. We never forget our own. Hope all is as well as possible. my love, Jo