Good Morning All, I really wish I knew what stage of dementi

Good Morning All, I really wish I knew what stage of dementia my mother is in? Sometimes the things I read on the topic or hear on the topic leaves me little hope or ... more confused than I already was. Things seem so vague or "not exactly" that I don't know what to think. At this point to say the very least I need care myself. I could use some expert advice and I don't know if there is such a thing where dementia is concerned.

Mom called me this morning and she is having a problem with balancing or as she calls it....sliding. She is at the SNF but they are not always in everyone's room. She was able to yell help and the young woman giving out meds came to her rescue. Once she is up she is perfectly capable of walking, Just during her getting up and down where she has problems. Ironically she told me if this happens again they told her they would send her home. I know I don't believe that. I think this is her way of trying to figure out how she got there and who put her there.

Last Saturday I went to see a friend, just to give myself a well needed break. Wonderful time and a wonderful evening. But I could really use some more friends right now. Everything I am going through has been so overwhelming. One area in particular - has been a HUGE waste of my time. I do have that in proper perspective right now. I will not be wasting time in that endeavor any more. Just throwing all of this out there for any responses. I am feeling quite disappointed in many people right now and I find myself cutting more people out of my life. I need focus, clarity and a direction for something new. Let's put it this way, I need to get out of this mess I am in. Obviously, not talking about abandoning my Mother just abandoning some of the negative people in my life.

dementia is not well understood at this point I think. much research still needs done. and by all means get the negative people out of your life

@norseduncan Thanks so much for confirming my thoughts about losing the negative people.

There are so many illnesses that are sprouting up and have branches of a larger tree. For instance, Dementia & Alzheimer’s, Autism, Depression and the list goes on and on. You never heard of these vast diseases like you do now. I realize the medical profession is finding out more and more. But I think we can all say too little too late. Someone on this board posted the link (sorry that I cannot remember who at this point and finding some of the responses is a challenge, don’t know if I am doing something wrong or what?) and that link was helpful. All be it, confusing just as well. The different types of dementia and ironically the similarities thereof.

One of my recent observations was much like my Aunt who passed away 1.5 years ago, she was very annoyed and angry at home during whatever stage before she went into a Skilled Nursing Facility. My Mother who has dementia also was more agitated at home as well. Things like that I wonder about. I may never know. I am curious and certainly if knowing why would help, I would love to know why.

Presently I wish more people would go to visit my Mother. There are certain people who “could” but they don’t. I know of their reasons and/or excuses but it doesn’t make me feel any better about it.
I cannot help but feeling sorry for her, She mentioned the other day about her car insurance. I said, “Well it is not like you are driving right now” she replied, “No, not yet, but I will be.” There are times when I think she knows and is aware she is having problems, then there are those times where she doesn’t have a clue. Thanks for listening Norseduncan, I knew someone else once who was into his Norse heritage. Who do you have that had or has dementia? A parent? relative? or spouse? I know no matter who it is - it is a horrific disease that I wish they would do more research on. It is such a strain on us, the caregivers. And on the bright side, my mother still can walk and communicate. Although the conversations are getting harder to follow, she is still social. But all that said, I miss her. I miss her wonderful sense of humor. We did have a great laugh together the other day. But that has not been the norm. In fact with everything going on in my life, I have to try my hardest to go see her with a smile on my face because many times I just want to cry. I have to tell myself this is not about me. It is about being there for my mother.

Looking so forward to my class at the Hospital tomorrow on Dementia and Alzheimer's. Signed up about a month ago at least (feels like a lifetime ago). One of the top Neurologists in our area will be speaking in addition to other fantastic doctors. My friend and I are going together. I am expecting to get as much resources as I can.

My husban has dementia, but our Medicare supplement gives us 12 hours each quarter, so maybe her insurer has something similar.

Thanks for your response it was encouraging as well. I’m hoping to have my mom transferred to another facility as soon as her Medicaid period of an eligibility ends and she is covered which will be next month. It’s a long complicated story as I mentioned. I’ve had to bite my tongue more than I can tell you in regards to issues at the nursing home she’s in. If e been somewhat successful and the connections I’ve made to keep her comfortable but there’s neglect and I’ve had to let go of many things because she wasn’t fully Medicaid covered over a long period of time that she’s been there. If she spiked a fever or had to go to a hospital they would not allow her back. I do advocating for a living so you can imagine how frustrated I’ve been I feel for you and so many others on this site. It’s hard to see our relatives mentally diminish. I think the anger is the hardest thing I’m dealing with from her as she was living in a beautiful home and could no longer function there and refuse to but I need to take care of her as I mentioned already. I am in the process of trying to find some support groups close to me. My friends are very kind but don’t understand the depths of this disease.

1 Heart

@Triciacirish Definitely get in touch with the Alzheimer’s Association. They have support groups for Alz and Dementia. I am involved in one myself. I am looking into more. The one I am involved in now is a phone group. If you PM me I can give you the woman’s name and number. We have people from everywhere so I do not believe it would matter where you are. She is very knowledgeable and can give you other resources you may need.

It is tough seeing our parents and loved ones deteriorate is right. Mom is officially approved for Medicaid as of February 1st of this year. I really wished I could have kept her at home, but her habits are not the best - eating wise, taking her pills, etc. Even if I had the money to go that route, which I don’t but if I did she would only fall back into her way of living. She is very tiny and has never ate right. She is a junk food al-holic. At least in this SNF which does get checked out by the State has been serving good well balanced meals - which she is enjoying (Thank God) and they make sure she takes her meds when she is supposed to. Plus she cannot get involved with too much paperwork. She loves to read, books mostly, but also things like junk mail and I have had much problems with that while she was home. She can still walk, so she uses her walker and makes her rounds there. I know she is also angry about not being able to go home. But I also know they get worse at home. Her sister (my Aunt) who had Alzheimer’s and not Dementia was very agitated at home, and it was getting worse. Mom too, who has Dementia and not Alzheimer’s was very annoyed at different things at home. So they may be angry at first but it really is for the best. I know it doesn’t feel like it especially when you are the one taking the brunt of it. But think of the dangers while at home alone. My mother was still driving before this last episode.

Thanks I don’t know how to navigate this site very well I try to correct my typos and it cuts me off. Of course I’ll keep posting because I need to. I don’t know I had a personal message you. I have not had good experience with the Alzheimer’s Association myself. I found that their clinicians have given me a lot of Pat answers which has been frustrating. Sounds like you’ve had better answers perhaps you can just message me someone’s phone number if you’re comfortable with that otherwise if you could talk me through the PM system I’m all ears. I to realize that my mother was not doing well at home at all she was on safe popping Tylenol like it was going out of style and refusing aids sending them away etc. my brother and I tried to get her to move closer to us for several years and to set her self up with the five-year look back but she refused any suggestions or help. Still it always feels lousy said she emails me every day letting me know how angry and said she is. Always threatening to sue me. She cc all my Well-meaning relatives who are not involved and have removed themselves for the most part.
Sorry for venting so much this is been my only forum

1 Heart

@Triciacirish Hello again, if you click on the support me button then I will be able to send you a message with the woman’s name and phone who could possibly help. This way when you and someone else on this board support each other, you can send private messages. Truthfully I don’t think this woman, since she is trying to help, would have a problem with my giving out her phone on this board, but then again - we don’t know who else out there is lingering? I can also provide some of the information that I went through going through this process. No problem on the venting - I get it. I really do and you should hear me in my car sometimes. Not pretty I can tell you that.