Having a tough time dealing

AlixdaLion

Okay you guys here's the situation. My grandmother was diagnosed with moderate to severe dementia earlier this month. We had noticed that something was going when she started to forget important dates and around the holidays this past year when she forgot to pay bills that normally she was always early or on time for. The dementia is progressing fast. My grandmother was one of the sweetest people alive and this condition has turned her into someone violent that I barely recognize. The medicine the doctor gave her isn't working and it is getting to the point where we have to start looking for a home for her. 

This is the woman that raised me and I'm having a bit of a tough time dealing with it because of the fact that I will have no choice but to watch her deteriorate as time goes. I find myself crying when I think about it to the point where my boyfriend doesn't really understand what I am going through and it is frustrating him. 

I need to figure out ways to deal with it or cope because I can't keep living like this. 

Nerdyblond

Hi Alixda, 

This is very tough. When I started with my mom I cried all the time. Partly because of fear of where I might be headed at that age and partly because I am not close with my mom, but I felt like I had to do this, because no one else could or would. It was on my youngest sister and me to do this. 

Then it got dumped on me, because my sister was anti-vax and when she found out I got me and mom vaccinated she lost it. My oldest sister was worse. they were both conspiracy-theory junkies and my oldest sister called my mom a traitor and a back-stabber, and said she could not come around anymore because mom would give her COVID and the house was full of COVID and she did not want to watch mom die, because mom would be dead in a week...beeecause she was vaccinated against COVID...and my oldest sister was not. Yea...she is mentally ill. She is the horrible sister.

I wandered....I am still pretty angry about all that. Back to the original point:

Get the feelings out now because you need to be emotionally strong for this. Know this isn't your grandma, it is the dementia, and she would never be like this otherwise.

You cope on a daily basis. Every day is a different day with different feelings and situations. You are pre-programmed to find coping mechanisms. Just pick anything that does not involve hurting or damaging yourself. You take walks, you write in a journal, you talk to people...friends, people here, all are very supportive. Have your boyfriend join you in these post readings. 

You keep smiling and making jokes and getting your grandma to at least smile. You tell her you love her, you touch her face, her hands, you bring a light to her darkness. You take away her fear with your presence, because this is scary and signifies a near end to her life which is traumatizing. And you do whatever you can to keep that silver lining broad because when the end comes, you will have the peace knowing you brought her everything she initially gave to you when you needed it. You give it to her. She taught you love. You show her what she taught you. 

Joydean

I’m so sorry you are having to go through this. It’s not something that any of us want to deal with, but we are. This disease road is hard and will change all of us. We just do the best we can. 

Welcome to this forum where no one wants to be. There are a lot of wonderful people here and they have a lot of wisdom and knowledge to share. This knowledge comes from experience. So there will be others to come in and share with you. You didn’t say but do you live with your grandmother? Are you full time caregiver for her? Do you have POA and medical POA? These are some of the things that if you are her full time caregiver you will need. 

AlixdaLion

Joydean Thank you for your kind words. No I don't live with her, my mom and grandfather are her caregivers. They are in the process of establishing power of attorneys to make decisions on her behalf. My grandfather has had enough with the biting and scratching and my mom worries for my two brothers (18 and 13) and she's already attacked one of them and we refuse to put her in a home yet simply because the doctor recommended to keep her at home as long as possible and we're Filipino so culture says don't put her in a home.

But no I live ten minutes from her but I work 2 jobs so I go to see her as often as I can but my mom does include me and keeps me in the loop because she knows I'll go crazy if I'm not kept in the loop. 

AlixdaLion

Nerdyblond Thank you for your kind words. I'm going to need to get me something through this because I know myself, I'm a very emotional person and I'm going to be a wreck until sad to say this is over.

May flowers

Sorry you are dealing with this! If she doesn’t have a geriatric psychiatrist yet, she may need one to get meds adjusted - sometimes one med doesn’t work and another does. It was that way for my FIL, some of the meds to calm him made him worse, so sometimes it’s trial and error. Hugs and prayers for you

​fesk

If not already done, please have the doctor rule out any physical issues for the change by doing bloodwork, test for UTI, etc. If/once that has been done, it sounds as is a medication change/adjustment is needed. Unfortunately, it is trial and error with these medications, but hopefully they will find something that works better. Please get a specialist involved to deal with the medication.

This is an extremely difficult disease to deal with emotionally. There is grief and continual loss on a daily basis and sadness of what's to come. Don't hesitate to post here or talk with a counselor/psychologist, etc. for support. There is also the Alzheimer's Association support line which is available 24/7 - .800.272.3900.  

Nerdyblond

Alixda, don't underestimate yourself. Try not to focus on the "what if's" and whether you can cope, because you can. We all can and we are.

Jo C.

Hello AlixdaLion and a very warm welcome to you.  I can well understand your concern.  One thing that is very important, is to have a dementia specialist as part of the care team if you do not yet have one.  Our primary care MDs are wonderful at so much, but they are not on the cutting edge of dementia dynamics, especially when things become complex.  A specialist such as a good Neurologist who sees dementia patients as a routine part of his/her practice, or a good Geriatric Psychiatrist, would be the specialists one would want to choose from.  The primary care MD could manage the physical medical issues, the specialist would manage all things to do with the dementia and prescribe appropriately for the dementia needs as they change or arise.

Reason for having a specialist is two fold; first, you need an accurate diagnosis for actual type of dementia present; there are many different types of dementia of which Alzheimer's is only one.  Misdiagnosis is not uncommon.  The accurate diagnosis makes a difference as meds for one type of dementia may be contraindicated in another and make things even worse.  The specialists are also best at prescribing appropriately.  One would want to find either a good Neurologist who sees dementia patients as part of his/her practice, or a Geriatric Psychiatrist.  Both could ensure the diagnosis is accurate for type of dementia and also would be best at prescribing appropriately.

Also, one thing that happens often that can cause significant behavior changes, is the person with dementia having a "silent" urinary tract infection.  These UTIs are called, "silent," because there will be no symptoms of pain or burning, but there is often a huge change in behavior to the negative side of the ledger and it can be dramatic.  We see a lot of that here with our Loved Ones (LOs).  Once the UTI is treated, the person usually returns to their usual behaviors.

It is not easy to cope with all of this when our LO begins to become more and more compromised.   Despite the changes, they are still who they were in our memories and we become their guide and guardian angels with respect and love knowing that we are helping them as best we can in whatever way necessary to the end of their life's journey.  They cared for us; we now care for them.

There is a good writing to find on computer and download and perhaps even print off so your family can read it.  It explains dementia in detail, what happens from the first and through the journey and the "why" of how things happen.  It is by Jennifer Ghent-Fuller, and is titled, "Understanding The Dementia Experience."  When Googling it, use the title of the writing with pdf after it:  Understanding The Dementia Experience pdf.  That will get  you to it.

The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you or family should call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive, very helpful, have good information and can often assist us with our problem solving and planning.

I am an RN and have worked closely with many Filipino care providers; I understand the cultural implications especially as it regards the difference between care at home versus placement which you have mentioned.   That is something that can be worked out for what is best for the patient.  There is Memory Care which is different from a Nursing Home setting, so that is something to learn about.  It seems that your LO is no longer capable of living in Assisted Living, so that is off the table.  Even if one does not plan on placement, it is always good to have a Plan B just in case something untoward happens. One can begin to look online and then visit various places of care so you know what is acceptable and what is not if something sudden happen that needs that level of care.

Your beloved grandmother is blessed to have such a loving family and granddaughter to care for her, let us know how you are and how she is doing, we will be thinking of you.

J.

Ginger5533

May flower has made a good suggestion. I just joined but have been dealing with my husband for quite awhile. After a major accident the responded to medications in a bad "crazy" way. The hospital brought in a geriatric to review his meds and she made some changes that worked wonderfully.