Assisted living home for dementia

How are you feeling today Gizz? I am back in chemotherapy, another round yet again. How do I handle it? With my faith in God, and my support system. One thing the doctors never took away was my sense of humor. Awhile back my oncologist yelled "this is serious, you are truly really sick" and my reply was and in front of 2 other doctors happened to be "ya think? I knew I was in chemotherapy for a reason!" At first, I admit it back in 2008 I was in denial. 2009, a friend pulled me out of my depression, and lack of faith. My friend had me promise to go to church, and he lived at the time in a different country on a missionary trip. I went, and the sermon hit home to my heart. I realized I had my humor, I was alive, and this is just merely a test in my life. I now think positive, and if I'm having a bad day, and trust me some days I just cry because I am just so tired of being sick. I call it my pity party. My love, he has figured out how to distract me out of my pity party though. He always knows how to get me to laugh and smile again. I only met my love earlier this year, and it was truly fate we met. I made a trip on Greyhound, and my return ticket was stolen. I checked on tickets again, and Amtrak happened to be cheaper. The nearest train station was 5 hours away from where I was so I had to take their coach bus. Love at first site, the bus driver and I. I had an overnight layover so I asked him out - and he accepted. Fate be, he only started driving that bus a few months before we met. He had been living in New York and had a 20 year marriage fall apart (she routinely cheated on him). He decided to move to his home town and found that job. I went home , 300 miles the next day. Daily he and I talk like old friends, known each other forever. Two weeks passed, and he asked me to come back another 300 miles to see him and meet his family. He must of liked me a lot, because he drove 300 miles to pick me up and another 300 miles back home! He has been an amazing support to me and we love each other dearly.
Gizzy, you must take care of yourself hon. I am so glad your mother is doing so well. And remember, you can always talk to me and post til your heart is content (within forum rules of course) here. Hugss.

Two updates ..........

#1) to SmurfyShadow ...

   In the past two to three weeks, I did get a second opinion on Provenge from a specialist who works with that tretment often. His feelings were that Provenge would probably not do me any good ... and he was surprised how well I reacted to 30-months of the taxotere (chemo) in 2012/2013 - and that my recent bonescan showed very little difference from the last bonescan in October 2011 ... which is GOOD!

   As a result of the second opinion, I decided not to proceed with the Provenge. I am getting sick of foreign objects being put into my body. The Provenge would have required at least one (maybe two) catheters put into my chest for major blood draws ... and I already have a port in my chest for the chemo injections. So, as of this Friday, I will start a different type of chemo. Hopefully, this one will give me some additional hope for a future.

#2) about Mom ...

   I was over to see her last Saturday along with my daughter, and then an old friend of hers came too. It was Mom's birthday. When I think back of the year she has been in this Assisted Living Home, she really has gotten noticeably less receptive to the things going on around her.

   She is now, completely confined to a wheelchair when wanting to move. The walker doesn't work anymore. I notice that simple things like eating, are getting harder for her. That is, she drops food quite a bit and doesn't realize it.

   My daughter has had a recent job offer from an old boss of hers - although it wouldn't start until next March. But ... if she takes it, I don't know what I would do. My cancer is terminal. My Mother may outlive me, and if I'm gone, who is going to take care of the most rudimentory things for Mom?

   This may not become a factor ...... but, if it does ....... there's a problem coming down the road. Who handles Mom's money? Who pays the bills? Who makes the decisions when they're needed? And - who goes to see Mom? Mom's two closest next door neighbors (from where she used to live) have not visited her once yet. I don't expect they ever will. And yet, Mom, in her dementia state, still thinks these are two of the best people in the world.

   Actually, her old next door neighbor hasn't even called me once to find out how Mom is doing! What is wrong with people? Did they get what they wanted from her when she was living at home with dementia? And now ...... bye!!!!! Oh yes, and all of her jewelry was gone when we went thru her house this past Summer preparing it for sale. A coincidence?

   Sorry .... just in kind of a bad state of mind right now .... and sorry to see my Mother close to that of a living vegetable. Hey .... she was 96 on Saturday. But ... what's that about a qulity life?

Hope everyone's experiences are a little better ............!!!

    

Gizzy'n me said...
Hello ...
I kind of hit a brick wall yesterday when going to see my mother at her "assisted living home for dimentia". But first, a little background:

Mom was living alone (at her insistance) from 1995 to mid-2011 - and was driving her car for approximately that timeframe ... until she fell in her Kitchen and could not get up. She went into the hospital for observation and when released, her doctor said she needed 24/7 care in her home. That was at the age of 93!
For the next 15-months, she did have a 24/7 caregiver living in her home - and actually kind of got used to it! I think maybe it was a daughter-like relationship for her - since the caregiver was in her mid-50's. However, during those months, Mom had three different episodes - all in the late evening - all screaming that someone was in her home trying to kill her.
The last episode was very bad, she was admitted into the psych ward of the local hospital ... and after over 4-weeks, the psychiatrist and her primary doctor both said she needed to go into a home that had nursing care or with a RN on staff. Mom's caregivers at home, were no longer able to contend with the level of dimentia - in the psychiatrists opinion.
So ... the search for a home started ... and luckily one was found within two weeks or so that specialized in dimentia patients - and that had a lot of "home-y" type of things going on there. She was moved from the hospital to the Assisted Living home last September.

I suppose the very typical reactions happened - and for months - on and off. That is, she would ask "how long am I going to be here" or "when am I going to go home"? But, gradually she did get used to many of the nice aspects of this Assisted Living home - and I saw her enjoying herself very often when visiting.
Now ... over the course of the past 26-months of care (either in her own home or in the AL home) - her savings have dwindled down to pretty low levels. For 10-months now, her old home has been vacant and has been costing $500. or so/month to just barely maintain - with taxes, insurance and basic utilities.
Since she will never be going back home, and with her money account getting smaller, her home had to be put on the market for sale. The months of May and June were spent doing fairly minor things to her home - and it went on the market a few weeks ago. The home went into contract in a short period of time - with a closing set-up for the end of this month.
First ... the money from the sale of her home will allow her to stay in her current AL home - and delay or avoid going into a Medicaid Nursing Home. Second ... it is one responsibility off my back - going to her house 3x a week the past two months and once a week for the past 18-years. I am going thru major medical problems myself - including advanced prostate cancer (2+ years), kidney failure (2+ years) and COPD (5+ years).

Yesterday, I brought over to Mom some lighter weight clothes - her request from last week-end - in the colors she asked for. She immediately got nasty with me, wanted for us to go into her room for some privacy - and then it escalated to a level I hadn't seen for at least a year.
She did make up a few innocent-type of stories (signs of her deteriorating dimentia I think) - and then (as she had been doing in the past for at least the last 15-years) complained to me that she doesn't know why she didn't have a daughter because "they do so much more for their mothers than sons do"! It's been well over a year since I've heard that criticism ... but she was telling me that over and over - for at least the past 15-years.
I did see a therapist, 18-years ago, for a number of things going on at the time - and the therapist told me my mother has been laying a guilt trip onto me since I was a kid! So ... this isn't from dimentia!
I do not have any brothers or sisters (hardly my fault) - my Mom had been married three times and was an alcoholic (also hardly my fault) - and now ... my question for me is:

"What to do"???

Any thoughts would be appreciated!

Hello family care ...........

   I think you are replying to my latest post ... even though you showed my first post ... and there are a few months betweeen those posts, as well as, many conditions changed.

   It sounds as though you have not had any experience looking for and reviewing the various types of elderly care facilities. There are many types, there are many cost ranges and they're not all close by.

   One of the facilities, a nursing home, was close to my house. Amoung other things, the patients did not have private bathrooms. And there were few, if any, programs to stimulate the mind. It was awful - like a dungeon - but it was close to my home. And it was a Nursing Home, much different than many other types of elderly care facilities.

   I looked at and reviewed 5 other facilities, anywhere from 10-miles away to 20-miles away. Only one of those facilities specialized in care for both dementia and parkinsons (and nothing elsse)! It was perfect for the type of care ... and the next closest of it's type was over 25-miles away.

   Now .... how do you propose I find someone to visit my Mother? I can't seem to shame both of her close neighbors that they really should visit her. I can't force the one friend of my mother to go see her more often ... same with my daughter.

   We have a small family. I have no brothers or sisters ... and I had absolutely nothing to do with that! My Dad, Step-father, Aunt and Uncle are all dead. They have been for 15-years or more.

   And the people at this facility, are far more qualified to take care of any of my Mothers needs than anyone I personally know. So you are making a very careless point in what "I need"!

   Actually, I need a vacation .... haven't had a real one for 20-years. I had been calling my Mother daily for close to 17-years and seeing her at least weekly for the same amount of time. Been paying all her bills for close to 4-years ... doing her taxes for 18-years. Etc. etc. etc.!!!!

   Enough said!

 

Thank you Alice ...........

   I have not run this past the oncology office yet, but what I'm planning on doing is missing the first week after the chemo, then going to the next two weeks ... since the white blood count (WBC) should increase naturally over the course of a short period.

   The chemo is in 3-week cycles ... unknown regarding how long ... and from what I saw Monday, my Mother has lost virtually all sense of time. And that's just in the past month or two.

   I've been brushing out Gizzy .... will be going in for a bath and grooming and nails cut/filed tomorrow .... and will take him to see Mom next Tuesday. She asks about him ... and she loves to see him!

Have a great day ............................................  Rob & Giz

 

A halloween update ........

   I wish I could have gone over to see Mom this week ... would have liked to have seen the decorations they did for the holiday. The residents or patients are kept pretty busy there with different but simple forms of artwork.

   But, in accordance with my Oncologist, I can only go over there when my WBC (white blood count) is high enough to withstand all the potential germs that are there or in any hospital either.

   So .... next week is a busy one .... blood tests on Monday, EKG on Tuesday, See Mom on Wednesday, Kidney stent replacement surgery on Thursday, 3-hour chemo on Friday and to the hospital for a dressing change on Saturday.

   Good thing Mom's memory is so bad now. She couldn't put any of this together .... and it would be very confusing to her.

   And life goes on.

Rob

 

A new chapter starts ......

   While I lost nearly all of my close relatives 15 to 18-years ago, I never did have to go thru this situation. I guess there is a good chance many of us will need to sometime in our lives though.

   Yesterday .... I met with a hospice representative. It was for Mom. I had received 4-calls Sunday from the Home for Dementia. Mom had a bad day and by the 4th call, the nurse suggested my talking to hospice.

   I did go over there yesterday for the meeting .... reviewed and signed the necessary paperwork ... and then got a much better idea of exactly what hospice does and doesn't do.

   I did receive a call later that day - stating that the hospice care was approved both by the doctors and by medicare. And .... all of a sudden, Mom was better yesterday.

   The nurse stated it was likely a mini-stroke .... or it could have been something a little greater than a mini-stroke. It could be a matter of days - but more than likely a matter of weeks or more - possibly even months. Everything is such an unknown ... and she is a strong woman.

   But .... I guess ...... we're on notice! Until the past 3-years of obvious dementia ...... she has lived a very long and pretty healthy life. Only two minor surgeries in her life - and she's 96-years old! No cancer - never a heart attack. We all should be so fortunate!

   Bless you Mom.

Rob and Gizzy

 

Hello Lonie ...........

   Gizzy is standing right next to me as I'm writing this ....... he gets lots of hugs from me. He's giving them back too - in a slightly different way, but very close and supportive in his own way.

   I hope you're OK with where your Mom is at in life. Somehow ..... I am very OK with mine. Hope that doesn't sound crude or insensitive. After seeing a steady 3-year decline and being so close to it, I am finding some peace that her confusion and frustration will not be going on forever.

Peace and wellness

Rob and Gizzy

 

I am glad it was a nice day! How are you feeling hon? Are you in remission yet? I just went from pills to injections on my chemo. It is best for your mother to attend as many activities she is able - as it will help her not to lose those functions. The injections are working out better for me, as I am not sick as often. Remember you are not alone, and you can talk to me anytime hon. Hugsss

Rob, You are a man with so much wisdom and strength. My thoughts and prayers are with you during this hardship. With my gma, while she was passing, she was down like that, then had an uphill and was fine for a few weeks, then wham really down hill and passed two days into that down hill. In all honesty about the remission, I think it is how a person's body handles the treatment and how effective it is. My love has two kids, his oldest is a cancer survivor. She was terminal, as a kid, a rare aggressive brain cancer. Doctors didn't give much hope for her, and the family even had a family trip through Make A Wish Foundation. My love decided a second medical opinion was a must, and took her to Doernbecker's Children's Hospital (it is apart of Oregon Health and Sciences University, here in Oregon). The new dr had a positive outlook and wanted to try something different. He said in all his patients, they did chemo and surgery to remove it and within five years, it was back. So the DR just did surgery and radiation. She'll be 21 in January and has been in remission over ten years. With the type I have, I more than likely will be off and on chemo for life. I have what is called pseudocancer on my left optical nerve. Also known as eye cancer, specifically Necrotizing Gramultous Inflammation PseudoTumor. Pseudo is fake in meaning aka benign. Unfortunately, benign cancer is still treated as cancer, aka chemotherapy, radiation so on. I don't let it get me down hon. I made it in remission once, last year 3 weeks before Christmas. I was so exicited. I was back in chemo by Feb. I have the rare, aggressive kind of course. I hope you are heading for remission too hon! Remember, you are not alone in this battle. You have to be strong and fight. If you ever want to talk privately, you can shoot me an email :)

Yesterday .........

   I met the social worker from hospice and saw Mom at the same time. At first Mom was cranky with me (I was the first to get there) ... then she mellowed out for the social worker when she arrived.

   My Mother looks very much like she did a month or more ago with no visible signs to me of any kind of mini-stroke. But - that's what I heard. There can be large swings of mood.

   And so it was yesterday.

Hey Carol ........

   Anything new with your Mom?

Rob and Gizzy

 

Hello Carol and SS .......

Happy Thanksgiving!!!!

   Last week, three different people called me from the hospice group - a nurse, and chaplain (catholic) and a social worker. I met with the social worker and Mom earlier this week ... and the chaplain said he was well received by mom last week.

   My own chemo side effects though have gotten worse. I do have an appointment with my primary doctor today regarding the pneumonia and an appointment with my oncologist Monday to discuss the SE's, get blood tests and the next chemo treatment.

   I hope all is well with you both.

Rob and Gizzy