Like others who have posted about this condition, my mom (who is in the early stage of dementia) can appear to be almost "dementia free" when she is around her good friends-either when they come to visit or when she goes out to eat with them. She has always enjoyed spending time with friends and I'm grateful that she still does. The thing is, her behavior is so "night and day" from how she acts with me and my family (we are her caregivers) compared to being with her friends, that it's frustrating she can do basic tasks on her own when I'm not around, but when I am she cannot do anything without being prompted, several times usually. When I suggest that she can try to do something, she says that I'm out of my mind if I think she can do "such and such" (for instance, hang up the phone). Another aspect is that her friends will say things like "Oh you should really take your mom on a vacation" or "Your mom told me that she never gets to go for walks" which I would like to reply "You have no idea how she is when you leave!" Getting her to take a walk is always iffy, going on a vacation would cause her so much apprehension that we'd look forward to coming home to recuperate; even motivating her to get out of bed to get ready to go somewhere with us or with her friends is usually a battle as well...her well meaning friends have no idea of the reality.
It's been about a year since we've moved in to help her, and I try to focus on the good things: mom can still live in her home, my loving husband was not only willing to make the move but actually initiated it, the move has helped my MIL to move into our house with her cousin for companionship, I can help my mom with things she needs done for her (cooking, cleaning, laundry, verbal cues for shower/clothes etc., exercising and walking with her, finding things she loses-I tried to have her help a couple of times and it wasn't worth her frustration)- and I can still spend quality time with my daughter. Looking at the big picture and comparing this to the problems others have posted about I see I'm being short-sighted. I would still, however, greatly appreciate any advice or input. Thanks in advance.
For those of you that have taken on the challenge of actually caring for your loved on in your home, my hat is off to you and I hold you in my heart. Since caring for Mom at home wasn't an option in our case, and she fortunately is able to afford the care she receives, I can only imagine the pain and frustration you others go through. I know how hard it is for me to run back and forth to her facility and try to be there as often as I can, and still not have to provide the constant hands on piece of the puzzle. Bless you all for everything you do and sacrifice for someone you love. God Speed....
1) I give the nurse a list of things that are really going on so mom can't flash and dash her way around the questions the doctor asks
2) I ask to speak to the doctor outside of the room to tell him/her the truth about moms situation
Because all the doctors mom sees are aware of her dementia and what it can do to her they speak with me about her. It makes it easier on all of us. Mom is aware I talk to them and that it is about her health/condition. By being to speak without her present there is no uncomfortable position for either of us to be in.
I'm sure she had no idea she was doing any of it.
I suggest you get a care giver, "for yourself" to watch over the home while you are away. Any help you can get will help you. Dish washing, clothing washing, bed making, etc. Also get several of the full length incontinence pads for her bed and a waterproof mattress pad (the felt kind better. I had the quilted bubble full of water in the washer). Put depends and pads in her bathroom so she can easily change the pad. The Depends is backup.
She also sounds bored. Maybe there is a senior center with activities she can participate in.
Good Luck.
Not sure anyone has a definitive answer. Perhaps it is her way of getting the attention she feels she is lacking from her family?
I waffle between love and a feeling of responsibility for Mom and the disgust and vexation I feel when I think of how all that money could not only have given her a comfortable old age with expert care, but also helped her grandchildren and great grandchildren who are struggling with problems such as unemployment, school loans, Lyme syndrome, kids needing orthodontia, etc. Refusing to entrust anything to me, but happy to accept my chauffeuring her around and doing the grunt work only adds insult to injury. Well, I have to rise above that, accept that her mental condition is likely only going to worsen, and love her as the mother who birthed me and gave her all when once upon a time she was in her right mind.
It was hard for people to see the what had been obvious to those of us that have lived around her.
Even though she is in the later stages...stage 6 ish as far as her mental capacity goes, although she is still physically capable, when she first was in the Nursing Home, because she was so good at it, the nursing staff questioned why she was there.
The heads of staff however had pushed her a bit and could see what was happening, and within a month the rest of the staff having worked with her for a while finally saw it too.
With my mom though she has Alzheimer's and a Frontal Lobe Dementia so she show's differently then someone with either or and it can be confusing. They had to do training with the staff on how to deal with her because she wasn't acting like they expected her too.
As far as Dr's go...she did well at covering up ...except that the Neurologist would keep her in the room to ask me what was really going on...it was uncomfortable at first, but now I see the reason why.
When I spoke of the things that were concerning and such, she showed more of her true colors, and this really showed the Dr what he already knew, but could witness during our appointments.
It's hard sometimes...people don't believe you when you tell them what's really going on.
I've read so many stories over the past year of people being blamed for miss diagnosing or lieing about how their loved one is acting, because the loved one can put on the show for days sometimes if they are for a visit.
Given time however, if the family member decides the person will stay for a while (because the caregiver is obviously lieing about the situation), they soon find out the truth.
Dementia is such a horrid disease.
Mom has been in a home coming up 3 months now, and is doing well.
I get out to see her a couple of times a month, as she is about 1/2 hr away on the other side of the City, but in one of the best homes in the State (we were very lucky).
At any rate...as we all say...take care of yourself, know that this behavior is normal from your mom, and you are doing a great job!!
(((Hugs)))
No one can know your whole life. What you've described sounds nearly overwhelming and you are doing a terrific job. As Pam said, you must watch for burnout. You can still take care of your mom when you have help, even if that help comes in the forum of assisted living or a memory unity.
True, other than being on call for emergencies (which, in itself, can be stressful) you will not be providing 24 hour care. That doesn't mean that you can't spend as much time with her as you can (or want to).
Caregivers shouldn't judge one another and most offer support and advice. We caregivers do the best that we can with what we have. You have multiple people to concern yourself with, even though your husband seems like a dream when it comes to his family.
Do what you realistically can, but don't allow your own health to do down. That won't help your husband, your mom or anyone else. Most of all lose the guilt if/when you must make other arrangements for your mom.
Take care,
Carol
Just wanted to share. We were very thankful for the good times and tried to put her in as many of those situations as possible. For example her exercise class at the library made her happy that way. Up until the end, it was great for us to know where she could "pull it together", because we knew that would be a bright spot.
Sadly with all of our parents, I hate to say this, but one day they will be leaving us. In my case, as it seems in your case, we tried to make it the best transition possible. It was a lot of work, but well worth it for the good memories in the many years that followed their passing. Wishing you all the best in this challenging but rewarding Care Giving life.
Lets face it the switch is broken.
Right now it works when people visit. Enjoy the change while you can. As Alz progresses listen carefully as confabulation infestates
You're so right to suggest that caregiver burnout is coming at some point sense I have little time for much else besides mom. I don't think I'll be able to handle mom's dementia long term. I am amazed and humbled by so many on here with the way they handle so many tough issues, so lovingly and calmly; unfortunately this ability seems beyond my nature as I pray for strength daily.
Urinary incontinence is certainly challenging. Mom can't tell when her bladder is full and is unable to go to the restroom on her own. It seems to be either related to the grey matter around the periaqueductal region in her brain not working or some type of spinal nerve damage (I tend to research about this beast late at late). A timed schedule is usually a disaster resulting in total urinary retention, so she usually goes in her Depends during the day and night, on occasion taking off the Depends at night and wetting the bed. She sees her geriatric neurologist (who specializes in memory disorders) this coming Friday, and I'm hoping he'll have suggestions for some of these issues. The med to tighten her bladder and relax the opening was completely ineffective (prescribed by her GYN after urodynamic testing). I'll have to watch how I word my questions about it to the doc, since mom does not like to talk about her incontinence.
Thanks so much for responding. Sorry I've come back with a lengthy reply. I read your posts frequently, and really appreciate you taking the time to help others. This board has been so helpful.