Decision time - Tomorrow!

Discussion in 'I care for a person with dementia' started by Torontonian, Jan 9, 2015.

  1. Torontonian

    Torontonian Registered User

    Hi All,

    Got the "heads-up" call today that I will be getting a call from the long term care home tomorrow about a bed for mom being available. It will be available on Monday, January 12th and start paying at that time as well.

    So, now the decision time... I filled out the application forms this past summer per her geriatrician so that future planning is in place... we weren't expecting this call as the wait list for all the homes we applied for were about a year and a half but our hospitalization and getting up in the middle of the night and leaving the apartment to go home expedited it.

    My mom's 89, living with me for the past 20 years (almost) and was diagnosed with mixed vascular dementia/Alzheimers in 2005 where she had lots of fixation, very little confusion at that time.. Exactly 2 years ago she started having a lot of confusions, hallucinations, delusions, etc. She had an eye surgery in early June last year and from there on she has rapidly declined.. I had to take lots of time off during last year (close to 4 months). The latest episodes of "I want to go home/where is my daughter/where are my children" ended up in hospitalization and then home with carers but carers caused more agitation so no more carers and I just went to work this past Monday with a reduced hours. I am the only carer, have a brother who visits once a week but calls daily. I am 53 and have to work till retirement.

    So on Monday I went to work and a carer come around noon and would have stayed till I came home, say about 4:30. Carer text first then called saying your mother is agitated call her... I did but to no good... she was screaming as to why are these people coming, she didn't ask them to come and she will leave and they can stay if they want so she left... the carer followed and they both stayed in the building lobby till I came home.. Of course I received several more text messages from the carer asking when would I be home. That day, mom didn't eat anything nor did she take her medication.. So I arrived, carer left, agitation continued a bit more then settled down ok with an occasional where is my daughter..

    The next day the carer came, texed and informed me that she is in as I left her a key.. said mother was still in bed, pleasant currently but things turned ugly after 10 minutes... carer asked that I call as she is very agitated so I call this time she wants the carer to leave so she did as my mother's agitation didn't get any better. so this time the carer went down to the lobby and mother stayed home alone... when I arrived, carer left the building and when I came upstairs mother was dusting, looking ok and ate a bit .. went for a walk at a grocery store, all is good but later that night where is my daughter, again.

    Called and cancelled the carer for now.. came home Wednesday, mother seems ok, made her tea and had some food already.. brother came for dinner with his dog, lovely evening, chatting, asking questions (same thing over and over) then after 11 PM started again, where is my daughter.

    Today, no carer again, I came home a bit earlier.. around 4... still in nightgown, looking tired and cold... cookies and Ensure taken.

    Then comes the call from our placement coordinator for the heads-up..

    So, I must make a decision tomorrow. I have not seen this particular long-term home (nursing home), but heard good things about it.

    I forgot to mention that my mother has limited English language. She has full mobility, still uses the bathroom regularly with some accidents (daily). She talks, can read and write still, can understand the clock... TV may be real to her, hallucinating that there are other people living in our apartment and specifically they are all using her bathroom. Yeah she answers the phone with the TV remote.

    I shouldn't forget the evening ritual.. checking the doors, faucets, lights for at least an hour before going to bed and driving me crazy... I wait till she is ready for bed and give her 25 mg. quetiapine which gets her sleepy and she sleeps at least 4 straight hours...

    I am just writing all this so I can justify my decision tomorrow.

    I have constant headaches, obviously at this age (still 53) I would be going through "the change". I have extremely short fuse with everyone I know. I really would like to scream my head off some times.

    I have attended carers seminars at different times, had consulting, THANKFULLY have TP available to me at all times...

    So just mumbling and mumbling to myself to see if I can justify my decision tomorrow, whichever way it may be.

    By the way, if I were to decline the offer, I must wait for 3 months before applying again...

    I can also quit my job say for a year, use my savings which is there for my retirement and look after my mother for another year and keep answering her no mama, I am your daughter.. got older and uglier that's why you don't recognize me!!

    I also read everyone's posts here when they were about to place their loved ones in care homes and after the placement as well.

  2. Ash148

    Ash148 Registered User

    Jan 1, 2014
    Dublin, Ireland
    Torontonian, I cannot empathise enough and am so glad you are here on TP to get good counsel from wiser folk than I. If the care home is good, go for it. Your mum may need your reservoir of care, and time off work and a future point in her dementia journey. Take this opportunity now for a break. I wish I had a nursing home willing to look after my mother; unfortunately she is deemed too difficult and so is on her way to a psychiatric long stay institution. My very good wishes are with you.
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Torontonian, as I'm also in the GTA, I understand the process you have gone through. My personal choice would be to accept the bed. The CCAC would not have moved your mother up the list if she was not considered to qualify for long term care. In addition to waiting for 3 months to reapply, you might well have for another few months. I'm sorry to say this, but things will not improve, Your physical and mental health may well suffer, as well as your mother's. Please think carefully before refusing the bed.
  4. Torontonian

    Torontonian Registered User

    Thank you for your reply Ash148. They have not met my mom yet but we'll see what the future will hold... I keep thinking that she'll get agitated and get her blood pressure very high and have a stroke or something but we shall never know.

    Sorry about hearing about your mom's institutionalization. My very good wishes are with you as well. You keep well yourself too.
  5. Torontonian

    Torontonian Registered User

    Thank you Canadian Joanne!!

    I really appreciate your comments as you and I are in the same city and know the ins and outs of our system.

    I even had an email from her geriatrician back in August, telling me it is time to do this and to start living my life... she said I could be a loving daughter still but the day-to-day care will be provided by someone else. I am 90% there already.. have another 10% of my brain to switch over... Three weeks ago, I would have said absolutely 100% NO but not now...

    FYI, it is the Houses of Providence...
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    90% is a majority vote, isn't it? :)
  7. Torontonian

    Torontonian Registered User

  8. Caroleca

    Caroleca Registered User

    Jan 11, 2014
    Ontario canada
    Torontonian...please not change your plan.

    Mom went into the ch a year took my father 4 admissions to the hospital to finally say yes to the ch.

    He unfortunately still goes on a daily mom doesn't want anyone else to visit. She still thinks she is in the hospital and will not let us decorate her room. She does not recognize dad and thinks he is a friend that comes because dad asks him is terrible. The good news is she is very well cared for and it is the best place. She too would not have carers come in so we were really left with no choice.

    Dad takes her home for a few days at a time..but she always wants to go back to the ch. She still says" why am I in here? There is nothing wrong with me. I want to go home. But ultimately, she is much less anxious in the ch.

    Dad feels so guilty that she is in there....but a few days with her home reminds him of why she had to go in the first place.

    Please think of yourself and your have made the right decision...don't look will be just fine. Take good care
  9. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I too would encourage you to take this place.

    Your mum cant go on like that and neither can you.

    Just be aware that it will take your mum a few weeks to really settle and will probably be a bit agitated for a while.
    Its far better to do a planned placement than an emergency one.
  10. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    North East England 2 cents worth... Let Mom go into the home. If she really and honestly can't cope after say, 3 months, then think again but any less than that will not be a fair trial. Obviously if she is unwell, or physically hurting the rules could be changed.

    Have you had her checked this week for a UTI? Standard thought process here...unreasonable behaviour - UTI?? And I think, to be fair to you...what were you paying Carers for if they had to phone you all the time?

    You and she cannot cope's not fair if you are coming home from work to...
    In Care there will be 24/7 staff.....with the best will in the world, you cannot give that and work for a living....and your Mom would never have wanted you to.
    Give it a it by ear and be prepared to enjoy your time as a caring daughter not as a Carer.
  11. Torontonian

    Torontonian Registered User

    Decision is Made

    So the time has come and the decision is yes we will take the bed!!

    On Friday, got the call with the offer of a bed.. on Saturday, went with brother to see the place.. actually it was not too bad.. I have seen other homes in the past year and this was the best one of them... not too crowded, very wide hallways, not so loud... The unit is not for dementia specific so the residents looked quite and settled in.

    One issue though, currently there is a respiratory outbreak so no new admissions :D will keep mom with me for another few days at the least.

    There is also a dementia unit which is locked down. Residents cannot go to other areas. My mom's unit is open and she can go up and down the elevators if she wishes.. until such time that is if she decides to go home.

    My only concern is my mom's language barrier.. if she is unable to communicate her needs or concerns and she gets agitated, they may think she is acting this way because of her dementia.. I spoke to a social worker there and she said there are a couple more residents with language barriers but they do have a big board where certain words and phrases are written so that the caregivers can point out and try to understand what the resident is saying. There is also telephone so I suppose they will contact me under such circumstances...

    Now I will be the bad daughter and start packing slowly behind her back... As she lives with me and we are always together, I have to find some time to start packing slowly and leave a bag or two in the car without her seeing.

    When the time comes for her to be admitted, we (brother and I; yes he will go with me!) to take her to her doctor's appointment and while there to say the doctor would like you to stay here a few days for some tests... As my mother has no recent memory, hopefully she will not remember that we lied to her.

    Thank you everyone for reading my earlier post and giving your advice and opinions... Very much appreciated... I know we are all under the similar predicament and hope everyone finds easier ways to manage their lives under the circumstances.

    I suppose my real stress will start after my mom moves out but then with the help of friends, I shall overcome that too!!

    Yes I will wait at least 3 months before I say nope, can't bear to see my mom over there, must check her out... It is a promise...

    Thank you!
  12. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    I think it's wise that you will give it 3 months before considering any changes. What you may not realize is that you will need to settle in to the changes in your life as much as your mother will need to settle into the nursing home.

    Also, if you feel that you see a decline in your mother when she goes into the nursing home, do not think it is because of the home. Sadly, a change in living situation cruelly shows up how a person can no longer lay down new memories, such as where the bathroom is, where they are, where their room is. I know how desperately guilty we can feel, thinking we've done the wrong thing. But the reality is the disease is doing all this and not us. Remember that you have done the best you can with the information you have.
  13. Torontonian

    Torontonian Registered User

    Thank you Joanne..

    I suppose the hard times will start now... I have no choice but to get ready for this and keep going... I will "try" not to feel guilty as I had my mom living with me for almost 20 years.. we have looked after eachother during these years.. We have gone outing together, vacationed together... in the past year or so, holding hands and walking.. everyone in our neighbourhood knows us.. sometimes I stop by the grocery store after work and they will ask where is "mama" because we always go together so I shall not feel guilty for doing this as she needs to be safe and I have to be working... if there was any other solutions, we would have figured it out. Reading the posts here is helping me... I am not alone..

    Thanks again!
  14. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    Good luck, hope your mom's admission goes smoothly and that your brother gives you the emotional support you will need.

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