Caring For Mama With Alzheimer's...

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Regina Lynn
New Member


Date Joined Jun 2014
Total Posts : 2
   Posted 6/29/2014 7:44 AM (GMT -7)   
Good Morning Everyone...

When my Father died suddenly I quit my job immediately to move my Mom in with me so I could take care of her myself... She had always been my best friend... To make A long story short... The Alzheimer's patient goes back to their teenage years... So my Mom thought her youngest Son was her husband, our Dad... As hard as it seems you must go along with it & what I mean by that is keep a physical distant to prevent grabbing as they don't realize what they are doing is wrong... Here are some helpful things that I found by just working with my Mom... She died 5 years ago on June 30, 2014...

1) Do not let anyone say anything that will upset them... They won't remember what was said but they know that they were agitated...

2) I play DVD's of Engelbert Humperdinck, Tom Jones & Dean Martin for Mama.... She loved them always & it kept her calm.... I would get her up off the sofa to dance with me... It really worked well so I played them during all of her awakening hours...

3) My Mom was a devout Catholic but with Alzheimer's would cuss like a sailor LOL & let the "F" bomb fly... Just ignore it...

3) My Mom & I had the same Doctor so he knew us both well... He prescribed Ativan (Lorazepam) for her to help keep her calm... And Ambiem to sleep at night... I found that giving it to her at least 1 hour before bed with coffee or something hot to drink because it makes it take affect quicker then feeding her a good meal because you sleep better on a full stomach ... I take all my medicines with coffee & have for about 15 years...

4) Use Depends for them to sleep in... I told my Mom they were some fancy panties for her... LOL.... With a waterproof pad with felt on one side & plastic on the other to prevent urine from going through on the sheets...

5) I NEVER allowed anyone to tell my Mom that my Dad died from committing suicide... I never mentioned my Dad & if she brought his name up I would say I guess he's still at work & she would forget about it immediately... She didn't remember he was retired anyway... My point to not bringing him up was to keep her calm... I wanted to keep my Mom as calm as possible but without medicine...

6) Any surgery they have as my Mom had a lump removed out of her breast & they wake up worse with the Alzheimer's ... It's the sedation & being put to sleep for the surgery that does it... Non reversible...

7) Try to keep them awake during the day... As they sleep better at night...

My Mom died in the hospital in my arms with her 3 favorite people with her... My little brother, my daughter & myself saying the Lord's Prayer... about 12 hours before she died she slipped into a coma state but 3 hours before she died she had "Clarity"... It's beautiful... She said Regina I'm so sorry for what everyone has put you through... Somehow, she knew that my 2 older brothers & one of them son's my nephew had driven my crazy about trying to get money from her by sending her to court which I represented my Mom myself after spend 20K on attorney's... They call 7 times APS which all 7 times proved to be false charges against me....

My Mom's Clarity proved that she in knew what was happening... She thanked us 3 for always being with her & sticking together .... She told us she loved us so much... And that she was ready to go be with God & my Dad & her loved ones that had died years prior... The Clarity I hang on to because my Mom let me know that she knew I had gone through a divorce & that she was proud of me... I wish I could have recorded it but didn't know it existed until I saw it with my Mom...

Contact me on here if I can ever help answer any questions... Or if you need someone with patients just to listen to you talk... You definitely need someone that will listen to you & actually hear what you say...

Sending Prayers to all...I hope you find this helpful... Love Hugs & Kisses... Regina Lynn...
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Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 478
   Posted 7/4/2014 4:31 PM (GMT -7)   
Hi Regina,

I just read your posting and I am in tears. My mom has Parkinsons and dementia. I am her only caregiver because my sister and brothers do not live near us. It has been a struggle the past 8 years I did it and I love my mom dearly so I sacrifice my health and social life to take care of her every need. I take my mom to a daycare center while I go to work and I hired a helper to take her home and stay with her until I get home from work. it worked out fine all these years until this week when everything came crashing down on me.

The daycare center called me and said they can no longer handle my mom because she's too heavy to lift and they do not want to injure their workers. My helper of 6 years quit 1 month ago and I hired a new person who was just starting out and was having problems dealing with my mom's special needs. My mom got bronchitis with UTI and needed antibiotics. This explained her sudden loss of leg strength and the ability to walk with assistance. Since I am alone I was having a great deal of struggle to get her to the bathroom and bed once the helper leaves.

I convinced my sister to come and help me but she would only stay a couple of days. My anxiety has been going through the roof because of having to deal with this alone again when she leaves. My sister wants our mother in a home so we can all have our life back. I am fighting it because I have separation anxiety when I am away from her. I have been with my mom for the past 8 years without missing a single day. For all these years I have managed to care for my mom but now with her legs not cooperating it is next to impossible to move her around. I do not know what to do. I refuse to let her go. I hear horror stories about these homes and even if they treat her right she is still with strangers and will feel all alone and look for me. Just thinking about it is making me cry now. My mom is like a child and is very needy with me. I was the same way with her growing up which is why I am the way I am now with her.

I suppose I'm just venting and not looking for solutions because the obvious one is to send her to a home since I can't do it by myself anymore. I am just so lost and feel so alone with out support from family. Lots of families care for their sick parents when it is done as teamwork. I do not have that network of support so I am very bitter and sad. Thanks for listening. I don't know what will happen in the coming days.

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 7/6/2014 7:21 AM (GMT -7)   
Hello Bella .........
 
   Try to curb your bitterness for a family that doesn't give you enough support. The bitterness does no good and solves nothing.
   I lost my mother in January of this year - and no one else ever paid her bills and called her daily for 17-years while seeing her weekly for many years. That is the way many families are - often over-involved with themselves or with unemployement, educational needs or simply finances.
   I have had stage #4 cancer for 3-1/2 years, so my involvment with mom had been much less than yours. Again - most of us have circumstances we have no control over - and that we must deal with.
 
   Close to two years ago, I found a Home for Assisted Living that was geared specifically for Parkinsons and Dementia. My mother spent her last 16-months there - and it became home to her.
   Yes, it took some time. It always does - but the staff there was very caring. The facilities were very clean. They believed in pet therapy, so they did have in-house dogs and cats between the 4-buildings that were on site.
   They always had a series of programs daily - and entertainment that came in at least once a week. The Elvis Impersonator was moms favorite by far. I was kept well informed. My dog was invited to come over for a visit along with me any time I wanted.
   My mother used to have dogs. And in the last month or so, she thought i was bringing her dog over to see her. While it was costly, it was a wonderful way for her to spend her last years .... and we avoided having to put her into a nursing home approved for medicaid.
  I was her only regular weekly visitor - although my youngest daughter went to see her every few months. And a friend of the family went to see her every few months.
   I wrote the thread "What to Do?" in this forum. There is a ton of detail there.
 
   Since I was the only child, there was no one to argue with about her money - a good thing. As long as she had money or home equity, she was NOT going to go into a medicaid home. I watched my grandmother go thru that with alzheimers - mom was not going to go thru that - and she didn't!
   Whenever you make a decision ..... do NOT hold yourself to blame for it. It is time to take care of yourself.
 
Rob & Gizmo
 

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 478
   Posted 7/6/2014 8:31 AM (GMT -7)   
My mom has medi-caid. What happens to people in those nursing homes? Are they bad? I heard nice private facilities allow medi-caid patients. Is that wrong? Was your mom ill when she went to the assisted living place? How come she only last 16 months? I am terrified if she goes away then her life will not last as long. I will read your posting after this.

Right now I am in the selfish phase. I don't care that my sister has a life away from us. I just want her to treat out mother as her top priority just as I do so she should drop everything and stay with us until our mom gets better. I know it's a childish and unrealistic demand but I am gutless right now so I feel like a helpless puppy. I just want to curl up in a ball and go to sleep and wake up the next day as if last week never happened.

My mom sleeps most of the day and has no interest in anything. She gets very annoyed with loud noises and will not participate in anything. She does not like pets but loves babies. However her attention span is very short so she will focus on a baby for about 20 seconds then she will look away.

It's not so much that my mom has changed but that it's now I'm reacting to the change. I am a creature of habit and as long as things stay the same I am calm and rational. If a routine is messed up I freak out and a thousand thoughts go through my mind and I want things done ASAP or else it will stay in my head. My mom is totally oblivious to what's happening. As long as she sees me she's happy and content.

I have a panic disorder that has blown up this past week. I am still dealing with the fear as best as I can. I just wish it will go away. Thanks for listening. I know I'm not the only person to go through something like this but when it's happening to you personally, you just don't know any better.

Gizzy'n me
Veteran Member


Date Joined Jun 2013
Total Posts : 1870
   Posted 7/6/2014 11:49 AM (GMT -7)   
Bella ........
 
   My mother was having problems for many years - and was very independant after my Father passed 19-years ago. It was a fall in her own home on Easter - over 3-years ago - that put her into the hospital.
   During her hospital stay, her Doctor wanted her to be under observation because of her indignance by the hospital workers.
   She was diagnosed with Dementia before she was released - and in order for her to be released in May of 2011 - I needed to get her a 24/7 live-in care-giver.
   Until her diagnosis, she was blaming things on me and some of her neighbors - mostly signs of distrust! After the care-givers started, she started to blame them for theft - including calling the police once on them for a stolen bracelet.
   A few days later, we found the bracelet buried in a cushion of the recliner she always used. One of the care-givers quit after that incident. But, there was a care-giver living with her for the next 15-months.
   She was also back in the hospital twice - both times in the psychiatric ward. When being released the second time, her psychiatrist said she needed to go into a home. The caregivers she had were not experienced enough in nursing to handle her any more. So she was released directly from the hospital to the Assisted Living Home - and was there for 16-months.
 
   In my locale, there were quite a few Homes for Dementia patients that each had a certain number of beds approved for use by medicaid patients. The trouble was the waiting line was so long, it could take several years for someone waiting - to actually get a medicaid bed.
   In some cases, the patient had to be enrolled as a paying patient first - and then, when an opening came, they could have the medicaid bed - being paid for by the government.
   I did go to one Nursing Home that accepted medicaid and it was very much under-staffed and with no private or even semi-private bathrooms. And they had no programs to keep the minds moving of the patients. It was very depressing .... and people shouldn't be treated like cattle - as they were there.
 
   All I can suggest is to look at a lot of places. They're likely to be very expensive - which might be where a larger family can help out. And - you might find a medicaid approved Nursing Home that can meet your standards. Just take the time to look and take notes - maybe even photos!
 
Rob & Gizmo
 
     

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 478
   Posted 7/6/2014 1:51 PM (GMT -7)   
So sorry about your mom's mental state. My mom is quite the opposite. She's very timid and smiles and never says much. The problem with her is that her legs give out and due to the Parkinsons she is quite rigid and very hard to lift. Our last helper was a big woman so she lasted 6 years and was the only one we ever used. We really were very lucky to have had her for all these years.

Just the thought of sending my mom away has put me in such a depression that I have lost 10 pounds this past week. We have always been close and co-dependent on each other. No one seems to understand what I'm going through because they do not have the bond I have with my mom. I'm not saying I love my mom more than anyone else with their mom but I was always by her side since I was a baby and she always protected me from everything. When she started to get sick I took over the mother role and never stopped. My sister married young and left the nest a long time ago so she sees our mother as a responsibility and not so much as her mommy like me. Her solution is to send her somewhere that she will be well cared for and that's the end of it. I see it as our mother going to a strange place and being scared out of her existence and forgotten. I just need to pray really hard for peace and borrow more time with my mom. Thank you.

JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2082
   Posted 7/7/2014 2:16 PM (GMT -7)   
Bella,

Not all nursing homes stories are nightmares.

We had to place my father in a nursing home when all his medical conditions were too much for home and he had a good life there. He was far better off than at home. I have Crohn's and had helped him care for my mother at home for close to ten years and I just couldn't do what he needed. His doctors said he needed 24/7 care.

You can't do it alone. I was extremely close to my parents, having lived next door for almost 30 years, so I understand, but there comes a time when you have to let someone help you help them.

It may take some work, but hopefully you can find a good facility. My mother had to be in one for two weeks before she died after a hip break, and while not terrible by any means, I knew I wouldn't place Daddy there when he needed care. It was at a home in the same town however that we place him and the atmosphere was very different and a much better fit for him. Not everything was perfect, I got annoyed at times, but the staff did listen and work with us and took good care of him.

We found a home that wanted family coming in all the time and encouraged it. That's a good sign to me that they weren't hiding poor treatment. I hope you can get some help soon. You both need it.
55 yr. old--CD over 43 yr. Hemi-colectomy '01; spinal cord injury '01; fistulae since '97; enteropathic arthritis, chronic pain, muscle spasms, scoliosis, rotator cuff injuries

Sometimes I have a wicked sense of humor, other times I have no humor at all, but most of the time I just have no sense.

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 478
   Posted 7/7/2014 2:53 PM (GMT -7)   
Thanks for the info. Were they placed in a medi-caid paid home? We can't afford the private facilities which is why I am very hesitant about the state run type. My mom is all I have. The thought of not being able to see her when I want and take care of her is killing me inside. She's very much like a child and gets scared very easily and always looks for me. I'm already getting upset just thinking about her leaving me.

Jammyamerica
New Member


Date Joined Jun 2014
Total Posts : 9
   Posted 7/10/2014 3:34 AM (GMT -7)   
In my locale, there were quite a few Homes for Dementia patients that each had a certain number of beds approved for use by medicaid patients. The trouble was the waiting line was so long, it could take several years for someone waiting - to actually get a medicaid bed.
In some cases, the patient had to be enrolled as a paying patient first - and then, when an opening came, they could have the medicaid bed - being paid for by the government.

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 478
   Posted 7/10/2014 3:40 AM (GMT -7)   
The homes by me are less than ideal and they do have medicaid beds available but that's just it. I feel like my mom will be strapped to her bed 24/7 until she leaves this earth. There will not be any one on one interaction with the nurses. No one would notice if her nose is running or her mouth is dry and she needs water and will anyone brush her teeth 3 times a day like I do and take out her partials while doing it? Will they give her medication on time? These are thoughts that are in my head all day long. I am so stressed out.

JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2082
   Posted 7/10/2014 2:02 PM (GMT -7)   
Bella,

Have you checked into Home Health Care? In my state, Medicaid will pay for 24hr. care for 5 days a week. That might be a better fit for you and your mom.

The homes we checked out had policies against using restraints. That's why they have special units so that they can be watched so as not to hurt themselves but have as much freedom as is medically possible.

When my father was in the Alzheimer's unit, the patients got very close attention. I can't say that it would be that way anywhere else. When we would come into the unit, it was as home-like as possible. This unit, which was a part of a larger nursing home, was set aside where they had far more attendants, and patients were never tied down. They had their own little kitchen, living room where they could watch TV like a family, an outdoor area, etc. Of course there were patients that were too sick to be up and about, but they were watched carefully.

My father was never restrained at the nursing home, but when he was in the hospital several times during this time, would be restrained because when he had a raging infection, he couldn't control himself. It was miserable for him. We made arrangements to have him a sitter 24/7 while he was hospitalized, which was paid for by his Medicare, so that he didn't have to be tied down. So I know how you feel.

No one will be able to replace you in your mother's life no matter how good a job they do. I'm not trying to convince you of that, but you sound like you are burning yourself out and seriously need help.

If it comes to the point of having to place her in a home, you can still be a big part of her care if you're able. You can brush her teeth 3x a day if you don't like how they do it. I know one woman in Daddy's home whose sister came and stayed with her every single day. My mother couldn't lift a finger and we family members waited on her all the time when we could. Same with Daddy. These homes encourage that. And if you both are miserable and want her back at home, you can change your mind and do that.
55 yr. old--CD over 43 yr. Hemi-colectomy '01; spinal cord injury '01; fistulae since '97; enteropathic arthritis, chronic pain, muscle spasms, scoliosis, rotator cuff injuries

Sometimes I have a wicked sense of humor, other times I have no humor at all, but most of the time I just have no sense.

Bella33
Regular Member


Date Joined Aug 2008
Total Posts : 478
   Posted 7/10/2014 2:16 PM (GMT -7)   
Thanks for your suggestions JaSanne. I do have home health care but it only covers 80 hours a month. I pay way more for the helper I have because it's now become full time. I have been trying to get a hold of the social worker that covers my mom's case but I can't find her.

I am in big denial. I cannot process the fact that my mommy is getting older and sicker. When I used to drop her off at the daycare center and had to leave her for work I would get sick to my stomach. She would watch me leave with a look of abandonment. When I was little I used to have separation anxiety from her whenever she dropped me off at school. This just goes round and round.

Nursing homes is so.... final. I know you said I can always take her home if it doesn't work out but just planning it gives me hives.

I talked to my boss about my situation and she was tearing up because she felt so touched by the bond I have with my mom and could feel the pain I am going through. It's tough.

JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2082
   Posted 7/10/2014 6:38 PM (GMT -7)   
I know it's tough. My mother was orphaned at age 6 and all her life she was terrified to be alone. I wound up living next door to her and even though I longed to live somewhere else, I never moved away because she couldn't bear the thought of my leaving. And she went everywhere with me. After she became ill with advanced Parkinson's, my father and I, along with my sister, took care of her at home, without Home Health (excepting a few months of in-home physical therapy). Medicare didn't pay for Home Health, though they did offer Hospice. Her last few years, she couldn't bear for my dad to leave her sight, even with one of us there with her.

I'm glad you have more help than I at first thought. I was worried that you were doing it entirely without help, but that's still a lot on you.

They become our babies.
55 yr. old--CD over 43 yr. Hemi-colectomy '01; spinal cord injury '01; fistulae since '97; enteropathic arthritis, chronic pain, muscle spasms, scoliosis, rotator cuff injuries

Sometimes I have a wicked sense of humor, other times I have no humor at all, but most of the time I just have no sense.
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