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Mom has Dementia and I feel like I am drowning ...(sorry it's long)
ChristyInAZ
Posted: Wednesday, December 4, 2019 4:26 PM
Joined: 12/4/2019
Posts: 1


About a month ago I had to fly to another state and retrieve my mother (70) bringing her home with me. Unbeknownst to me, she has been steadily declining mentally for 2 years. My older brother had been living with her and due to his own health issues and addictions, things had become unsafe and unhealthy for them living situation wise. Filth, not eating nutritionally, never leaving the house, no doctor visits. When my brother was forced to call 911 for himself, a family friend called me and shared their situation. I was on a plane the next day to retrieve my mother and here we are, a month later, finally in somewhat of a routine and she is doing well as can be expected. My problems however are many. She has yet to be diagnosed by a neurologist however her PCP said dementia for sure. I have an appointment w/neurology end of Dec. here in the state I live, we have a state run LTC program for those w/o resources to pay for the ridiculously high costs of LTC. I had to get her established as a resident here, move her Medicare plan to cover dr visits and then submit an application. Once approved, I will be able to find a MC center for her. My worry is that i am not doing it ALL for the right reasons. I am not a caretaker by nature. I have social anxiety issues (mild but still) myself and if I don't have enough alone time to decompress, I get very emotional and depressed. I would full time, have Rheumatoid Arthritis and a daughter just moving out and starting nursing school. I adore my mom but taking care of her feels like I am drowning. If its making plans, making appointments, taking her to them, buying what she needs, finding care for in home right now, I am all over it but the emotional vortex and literal care giving seems to stress me.  Currently she is in a spend down as she had a small IRA and she cant have that and use our state programs so she attends Adult Day Care and has a caregiver come in 3 days a week. i work from home the other 2 days but that won't be allowed for long. My job really is hard to do from home. So far my bosses are working with me. There are so many other little things but she really is a 24 hr care. She needs assistance to shower, her toileting hygiene is not good, she has wetting accidents, cannot find her room or the bathroom in my home even after a month of living there (not a huge house), she can in no way cook/clean and she is so incredibly SLOW when walking/shuffling like a lil penguin. She fears falling, is OBSESSED with my animals, forgets lots but remembers a little ... I think I want to explore MC centers and tell myself it would be better for her. She would have others with her cognitive issues, she would have her "own" apt hopefully giving her a sense of independence and people trained in care giving for her specific needs. BUT THE GUILT .... OMG the guilt .... will she hate me, will she ever be happy, will she be scared, will she be safe ... then the question, am I doing this for MY benefit or hers, am I horrible for wanting this ... would she want this crushing feeling for me if she were in her right mind ... how does anyone make these decisions when their LO is still somewhat mentally alert (she knows me, her granddaughter, how to feed herself, she can usually toilette alone if I am careful to wash her well each night) during the day yet a sun downer that has delusions and is up all times of the night? Reading some of the scales, I would put her at a moderate level. This is truly overwhelming .... how do you know when it is the right time to take the next steps?
KawKaw
Posted: Wednesday, December 4, 2019 5:50 PM
Joined: 11/22/2019
Posts: 185


I can feel the bewilderment and sense of being overwhelmed that you are feeling.

I feel very similarly, having just recently discovered that my mother has dementia and needs memory care.

I have only one piece of information that I can give you from my experience: my mother was horribly offended and furious that we placed her in a board and care assisted living situation.

She has settled in and adapted after a few weeks and thinks of it as her second home.  She would prefer to be home in her house, but this is okay as a "temporary situation."

I had planned on creating a home for her by moving to a larger place in a few months.  I have since learned that this will not be possible given the progression of her dementia and psychosis.

I am also disabled and am struggling to manage all the tasks required to get her care paid for, to care for her house, take care of her finances, taxes, insurance hassles, doctor appointments, etc.  I could not take care of her immediate emotional and physical needs on top of that.

I am a constant visitor at the board and care so that she knows she has not been abandoned or forgotten, which is a constant fear.

I am also struggling to meet my own needs, arranging all my doctor appointments, trying to get minimal rest so I can function.

It is overwhelming.  I know people accomplish this.  I am still learning how by reading posts here and doing as much research on dementia and care-taking as possible.

There are many similarities in stories I read here, though no two situations are the same.

Oh, one other thing I have learned from people here.  Be willing to learn to forgive yourself.  For me, it takes practice, like learning to play a musical instrument.


kelantol
Posted: Wednesday, December 4, 2019 6:08 PM
Joined: 5/3/2013
Posts: 411


Hi ChristyInAZ and welcome to the boards. Others will come along with more wisdom and experience to offer, for sure.  This is a wonderful and safe place to share your experiences, vent and ask for help and input.  

I'm sorry you are in this suddenly overwhelming situation,  but it sounds like you are on a path towards finding a safe environment for your mom that will meet her care needs.  I have just had to place my mom in a nursing home and when I shared about my situation and the (mental/emotional) dilemma I was feeling inside, one wise person reminded me that "care needs drive decision making".  This word of wisdom is for you as well. Your mother clearly needs care and it is up to you to take steps to get her the help she needs.  It's ok if you are not the one caring for her directly.  You can still be there for her by advocating for her needs, visiting frequently, and keeping watch on her quality of life.  

You ask:"will she hate me, will she ever be happy, will she be scared, will she be safe ... then the question, am I doing this for MY benefit or hers, am I horrible for wanting this ... would she want this crushing feeling for me if she were in her right mind ... how does anyone make these decisions when their LO is still somewhat mentally alert "

You are not horrible for wanting this.  You are doing what you can to care for your mom and it is what it is.  She won't hate you.  Happy doesn't always happen with dementia - but sometimes it does - and we can't always keep our LOs happy, but we can watch out for their safety and make sure their needs are met.  Your mom in her right mind would probably reassure you that she trusts you and she knows you love her, she'd thank you for getting her out of a clearly unsafe situation, and she'd ask you to help her adjust and visit when you can.  My mom isn't in her right mind either so we have to tell "therapeutic fiblets" (although mine are jumbo whopper-size fibs, tbh) to keep her mind at ease, and I'm actually posting on my own soon just to vent and get some input and perspective.  All that to say - it's ok.  It's hard, but you literally rescued your mom, good for you!  You are helping her as much as you can and dementia is horrible and hard and so upsetting and you will get through this one minute at a time.  

As far as making decisions with a mentally alert LO, we can only make decisions for them when they have been evaluated and the right professionals have determined that they lack capacity to make decisions for themselves.  A thorough evaluation will tell you more.  Being independent in ADLs (activities of daily living - feeding, toileting, dressing etc) and relatively oriented (knowing who she's with, where she is, more or less the date, etc) doesn't necessarily indicate that a person has decision-making capacity.  In the meantime, get all documents (POA etc)and finances and whatever other details in order.  Others will advise more to that end.  What helped me was to have plans A, B and C ready for when things reached the next level at different steps along the way.  It's been hard, though, not gonna lie - but at least I wasn't totally unprepared. 

When is it time to take the next steps?  Honestly, I think that happens when the current situation isn't safe or feasible.  What that looks like is different for every person.  "Care needs drive decision-making", as I quoted earlier, and to quote another forum member who is no longer with us, "don't let this disease take two of you".

 I know this is hard, but you will make it through and you will make the best decisions for your mom and you every step along the way, even though it's so painful. Your mom is blessed to have you looking out for her. 


zauberflote
Posted: Wednesday, December 4, 2019 6:15 PM
Joined: 10/24/2018
Posts: 767


  Now is the right time to make the next steps, mayhap....some are cut out to be caregivers, some are caregivers whether they wished it or not.  I am not cut out for the emotional stress; I am VERY fortunate that my mother more or less willingly moved to AL (in another state, where she'd spent her widowhood for 20+ years) at age 88, three+ years ago. Following is a very disjointed set of observations; I can't keep my brain on the train these days... 

I wish I had a daughter like you: your heart is big, your head is on straight, you have brains in your head, and you're clear-eyed about the future. You have already done an enormous job! May the great state of AZ come through for you quickly!

Re the guilt... do a search for "guilt" on the boards here. You will find yourself in very good company. We all need frequent reminding that we aren't God, there comes a time when we have to accept that what we do is the best we can do, and mothers typically don't want their children to drown!

My mom frequently knows me and my bro, knows when she has to go to the bathroom, often feeds herself particularly if it's finger foods, and is I think a moderately decent sleeper often. And yet she is in the late stages! As in, moving into stage7 if you count them that way. Your mom may know you for a long time to come.  14 months ago we moved her to MC in my city, because the long distance hospitalizations were killing us, more than a little literally. She's now 92 and has been on hospice for almost 6 months   The one actual admission to hospital since hospice started again was brutal on all of us, but at least when I got to go home I slept in my own bed. 

Your mom may be horrendously unhappy for a more or less brief period of adjustment to community life. She WILL be safe. She will be cared for by people who have a heart for caregiving. She's already probably scared, and a MC place will give her safe haven. She will have routine, familiar people and surroundings, and a daughter who comes to visit rather than a slave driver who makes her (whatever). Let MC staff be the villains-- they know how to do that without losing the PWD's trust. 

Meantime.... you could buy all new undies. The brand name is Depends, and they are like toddler pullups only in grownup sizes. You'd have fewer messes to clean up after. Also, would she walk more happily with a walker? The kind that has wheels on the front and either plastic skis or good old tennis balls on the back legs. 

Many others far more experienced than I will be along with more encouragement and insight for you!


CamanoDeb
Posted: Wednesday, December 4, 2019 10:23 PM
Joined: 12/4/2019
Posts: 2


ChristyinAZ-I would suggest contacting your local senior center. They should have a contact for your county senior resource center or county family caregiver program or aging & disability office. They have resources on only for your mom but for you, the caregiver.
CamanoDeb
Posted: Wednesday, December 4, 2019 10:25 PM
Joined: 12/4/2019
Posts: 2


Forgot to say, they should also have information on a support group for you. The Alz Assoc also has support groups in your area. I find them very helpful.
harshedbuzz
Posted: Thursday, December 5, 2019 4:14 AM
Joined: 3/6/2017
Posts: 2079


There are also positives to care in a MCF sooner rather than later. Your mom's carers will get to know her better and can help her socialize and participate in activities more effectively so she can benefit from that. Tasks and routines will be tailored to her abilities so that she can feel useful. Ideally, her care will come primarily from well-rested and professional people who are trained and experienced around dementia informed care. 

And you can go back to being a daughter who is there to visit, bring treats and maybe take her places.
CatBallou729
Posted: Thursday, December 5, 2019 9:19 AM
Joined: 3/10/2019
Posts: 138


 

I also have rheumatoid arthritis, and even though my case is mild I found caregiving to be terrible for my RA management.  The stress of living with an emotionally volatile dementia patient was unending and led to months of poor sleep, depression, pain and struggle.  I have a very kind employer and was able to work from home for a while, but eventually even that became impossible.  Since placing my husband in memory care I am rested, balanced and still able to be productive at work and visit him every day.   My RA flares have subsided and I enjoy life again (as much as one can with a husband in late stage dementia). I cherish our remaining time together and no longer want to shoot myself.  Hope this helps.


LoneDaughter
Posted: Thursday, December 5, 2019 9:32 AM
Joined: 11/29/2019
Posts: 3


I am newer to this forum so I may not have a ton to add, but I did want to say something about the guilt. I am trying to look at it from the perspective of what would I expect or want to burden my daughter with if it was me that needed the care. When I think of it this way, it does bring a little relief. I would not want my daughter to feel totally overwhelmed with all the prongs- the guilt, the loss of me as myself, and all the time, stress and work. I would opt for whatever care would allow me to be safe and have some quality of life while still maintaining a good relationship with her and lessening the burden on her as much as I could. When I get to the point of it taking a toll on her, put me in a facility close by, manage my care and visit me as often as she could. Good life is too short to rob her of the best years of it. I have seen it take the caregiver too and when it's over they have nothing left and go down the same path. I know for sure that is not what either of my parents would want if they were in their right minds so those are the thoughts I am going to try cling to when the time comes to take the next steps.
SunnyBeBe
Posted: Friday, December 6, 2019 7:13 PM
Joined: 10/9/2014
Posts: 955


LoneDaughter wrote:
I am newer to this forum so I may not have a ton to add, but I did want to say something about the guilt. I am trying to look at it from the perspective of what would I expect or want to burden my daughter with if it was me that needed the care. When I think of it this way, it does bring a little relief. I would not want my daughter to feel totally overwhelmed with all the prongs- the guilt, the loss of me as myself, and all the time, stress and work. I would opt for whatever care would allow me to be safe and have some quality of life while still maintaining a good relationship with her and lessening the burden on her as much as I could. When I get to the point of it taking a toll on her, put me in a facility close by, manage my care and visit me as often as she could. Good life is too short to rob her of the best years of it. I have seen it take the caregiver too and when it's over they have nothing left and go down the same path. I know for sure that is not what either of my parents would want if they were in their right minds so those are the thoughts I am going to try cling to when the time comes to take the next steps.

This is so true. If I had dementia, I would totally want to be somewhere where I could receive proper care without disrupting my family.   There is no way that I would want or expect my adult children to quit their jobs, to care for me around the clock, changing my diapers, bathing me, caring for me like a child on a long term basis. When I found good care for my LO I was elated and relieved, because I knew it was best for her and me. I never felt any guilt and I can't imagine that I would. I am proud of what I was able to find and procure for her. There are plenty of duties of caregiving to take up your time, even if the LO lives elsewhere.  


Goodtogo
Posted: Friday, December 6, 2019 8:16 PM
Joined: 11/27/2017
Posts: 45


Welcome and sorry you had to find us.  

While my LO was alive, I did everything possible to keep her home and safe.  Finally after several hospital admissions and rehab, I realized that keeping her home was not possible and used my plan b and placed her in MC.  It was probably one of the hardest decisions I made during the journey, however it was the right decision.  She was safe, a better environment for stimulation at the level she needed.  I did visit frequently even for mins to re ensure her that she was safe and saw her engage is a few activities.  I have often questioned if I should have moved her to MC earlier.  

For me it was a very difficult decision, with no easy answer, but the right decision for us at that time.  Should I have moved her sooner?  I don’t know, but I was able to provide her comfort, peace without her worrying.

Follow your heart and should find the answer.

Good luck 


Snoopy14
Posted: Saturday, December 7, 2019 2:00 PM
Joined: 12/7/2019
Posts: 1


My mom may be ready for more care. She has no short term memory and may not be remembering to eat. She is 76 years old and lives alone in Lakeland, FL. I do all of her finances and shopping for her. She has started to say she feels hyper when I visit her or take her out. Her doctor is thinking it is anxiety from the disease. She upped her anti-depressant, but it doesn't appear to have made a difference and getting her to remember to take her meds is another issue. I just ordered a large clock with the day of the week and date that you can set alarms on that I am going to try. I am busy raising three children and doing my best to make sure she is safe.

My mom has no money for care. I did recently, get her out of debt finally. She has medicare, but does not have a supplement. Are there ways to get more help in her home or for a memory care facility?

Thank you for your help.


PaniniSandwich
Posted: Saturday, December 7, 2019 3:14 PM
Joined: 7/1/2017
Posts: 134


Hi Christy,

Welcome and I am sorry you are in this position.  Please do not feel like you have to defend your thinking and feeling.  You know yourself and you know your mother and if placing her will give you the best way of going forward, for both of you, place her.  There is no judgment here.  

We are all in various stages of caring and honestly, her being somewhere not in your house will still require you caregiving, just in a different way.  You will still be her advocate.  You are not abandoning her because you place her.   You have already saved her by getting her out of that situation. 

"Will she hate me, will she ever be happy, will she be scared..." Dementia changes everything and what she may not have been able to tolerate before she may be perfectly fine with now, you just never know.  What I can tell you though from being on this journey is that change is the only constant and you have to make the next right decision.  You can't plan for too far down the road, especially with what she will be happy or not happy with because that can change.  

You are doing a great job in planning her move forward.  Always know these boards are here for you.