October 13th, 2014 6:18 PM
I agree with all of you. My mom is in middle stage. She is convinced the Doctor's & I are deliberately keeping her in the "facility" and that she will return to her pre-diagnosed state any day now. She consistently tells me that she is not as "sick" as the other residents and doesn't belong there. As middle stage goes, she is coherient most of the time, however if anyone spends more than 15 - 20 minutes with her, then they realize she is not making sense. My frustration is with the "family members" who speak to her on the phone once a week for maybe 10 minutes and then choose to question my actions when my mom calls them with complaints, yet they are not willing to stand in and take over her care. I am the only support she has for 200 + kms and I am single and self employed. Life is hectic to say the least and every day is a new challenge. I never know what mood she will be in or what arrangements she has made regarding "moving" into her own apartment - which will never happen! Her cell phone bills are averaging 10 - 12 pages per month of random calls making inquiries on other accomodations or trying to arrange for a second medical opinion. She had the hospital send her the medical reports in her file claiming that the diagnosis made is inaccurate. It was not pleasant trying to calm her down after reading some of the notes by the doctor's. She has tried to challenge the EPOA and Personal Directive with a lawyer and I spent some time defending my legal position with him. All of these things she does are very inconvenient and time consuming for me, yet she feesl that she is desperate to escape and will do anything to achieve that. People have told me that she may never stop trying. There are times that I just want to run away and never return, however, I know that then she will truly be all alone. This web site and the blog are a relief to me just by knowing that I am not alone in this journey. Thanks for everyones post!
November 8th, 2014 4:23 PM
I have dementia and understand your frustrations at this time. You see, I am just as frustrated, as one momement I am able to do things and then can't. I am trying to remain independent, so will go in store and try to buy something. Maybe I can but often become confused and can't coun't change, and when I return to car I can't talk properly and my husband feels guilty for letting me do this.
September 7th, 2016 11:23 AM
I find that people are aprehensive unless they have known a family member with Alzheimer's. I will sometimes let people know that he does have memory issues and that he may forget why I left him alone. I will tell them that if he is looking for me just to say I will be right back.
I have told my neighbors that he has Alzheimer's and he will not know who they are. I do tell them that they can can hello and have a conversation with him and encourage them to do it. Two neighbor will walk over to say hello if they see him outside.
I tell waiters or couples at our table if I am at a dance that he may be looking for me and find that they are OK with it. When I return they will tell me he has been looking for me if I have been gone more than five mintues.
I casually suggested to family members to stay with him or visit him. My sister has volunteered to do this occasionally for a few hours so I can take a break. His children and grand-children have visited or invited us to visit but want me near by.. His children will do it if there is an emergency fortunately. As they are all working full time and have children I have not formerly asked for respite or to stay with him.
September 17th, 2016 10:06 AM
As i have said before, a Loved One can be normal for 20 minutes and then they will start 'looping'. It is a personal issue to me that a doctor has 15 minutes with a patient. If the doctor were to spend 20 minutes he would see them repeating themselves. The same thing with visitors. If they are only exposed to your Loved One for a short period of time they don't see any issues. If you can, leave them with your Loved One while you go to the store. When you come back they will have a different attitude towards your Loved One!
February 1st, 2017 2:07 PM
Hi. I agree that others think he's ok... After they spend a little time with him, they realize he is a little lost and repeats things. Problem with leaving him with someone for an hour or so, he begins to look for me and gets agitated that Im not there. My children are going through the denial stage (still) and think its not so bad. But now they are realizing I cannot leave their father alone at all and therefore I am not available like I used to be for the grand kids etc. I am getting registered with local home care and the care givers solutions in the area. I have told a few neighbours and they are very helpful if they see him outside. I have finally gotten over the embarrassed stage and am going to welcome any help I can get.
February 22nd, 2017 3:17 PM
lesty wrote:
I agree with all of you. My mom is in middle stage. She is convinced the Doctor's & I are deliberately keeping her in the "facility" and that she will return to her pre-diagnosed state any day now. She consistently tells me that she is not as "sick" as the other residents and doesn't belong there. As middle stage goes, she is coherient most of the time, however if anyone spends more than 15 - 20 minutes with her, then they realize she is not making sense. My frustration is with the "family members" who speak to her on the phone once a week for maybe 10 minutes and then choose to question my actions when my mom calls them with complaints, yet they are not willing to stand in and take over her care. I am the only support she has for 200 + kms and I am single and self employed. Life is hectic to say the least and every day is a new challenge. I never know what mood she will be in or what arrangements she has made regarding "moving" into her own apartment - which will never happen! Her cell phone bills are averaging 10 - 12 pages per month of random calls making inquiries on other accomodations or trying to arrange for a second medical opinion. She had the hospital send her the medical reports in her file claiming that the diagnosis made is inaccurate. It was not pleasant trying to calm her down after reading some of the notes by the doctor's. She has tried to challenge the EPOA and Personal Directive with a lawyer and I spent some time defending my legal position with him. All of these things she does are very inconvenient and time consuming for me, yet she feesl that she is desperate to escape and will do anything to achieve that. People have told me that she may never stop trying. There are times that I just want to run away and never return, however, I know that then she will truly be all alone. This web site and the blog are a relief to me just by knowing that I am not alone in this journey. Thanks for everyones post!
Lesty - I am the sole caregiver for my wife and at times could just say "I can't take it anymore" and give up. But I realize this would not benefit anyone so I just keep trying. I have MS and find it difficult to do some things. We have two daughters and I met with them and expressed how I could not keep doing everything and needed help. This seemed to work because now they are doing their best to take her out 2 to 3 times a week. I now have a cleanning lady that comes in 2hrs. every second week also I am getting frozen meals from Chef's Choice (Meals On Wheels) I just call and preorder them and then my daughter picks them up and pays for them at a local seniors residence. These items have freed up some time and the girls try to give me some respite. My wife is non combative other than insisting that I am wrong about something. At any rate it is not easy but having these discussions and posts really helps because it just shows that we are not alone in our frustrations.
Regards - Ken
February 25th, 2017 6:42 PM
Chris wrote:
I have dementia and understand your frustrations at this time. You see, I am just as frustrated, as one momement I am able to do things and then can't. I am trying to remain independent, so will go in store and try to buy something. Maybe I can but often become confused and can't coun't change, and when I return to car I can't talk properly and my husband feels guilty for letting me do this.
Chris - First off I must congratulate you for having the couage to do this post. This gives another way we as caregivers must look at things and do our best to try and understand what the person is going though. It demonstrates that the person must be shown some empathy and as caregivers we must appreciate the position they are in. This is just my own personal views but this has sure given me another way to look at my situation and stop the "poor me" attitude that I was developing. More posts from you would be greatly appreciated.