What's Happening in our Caregiving World?

[Buttons2]

Jeannie, my heart aches for you. you are a good daughter. does the nh staff know you want your Mom at your house when the end is near? have you talked to the people @ hospice? it's all about the medicare money in the end,sad to say. wish my mom had the sense she needs so I could actually talk to her! still don't think it's Alz, but certainly some type of dementia.

[tic chick]

hey pati!

i have talked to hospice already. alzheimer's is a terminal disease. i would have to take her off all meds and not treat her urinary tract infections and she would die of blood poisoning, but i'm not ready to do that and i'm sure my sibs would not like it. i will let her be treated for urinary tract infections and pneumonis unless her cancer has gone to other parts of her body, then i will no longer prolong her suffering. it's such a fine line what to do at any stage, but i have a pretty good grip on when to withhold treatment and not let her suffer any longer. medicare pays for hospice. it is cheaper than drugs and hospitalizations and the cost of the nh if you bring your loved one home. it costs the least of all options. i'm not doing it cause of cost though, i just don't want my mom to die in the nh or suffer.

i haven't told the nursing home of my plans, i don't think they have to know. i keep close enough tabs on my mom that i would know if she's deteriorating. if she had to go to the hospital and they said her cancer had spread, i would prolly ask how long they think she might have left and then just check her out of the hospital against medical advice, which is my right to do as her power of attorney

pati, i remember you saying that your mom had thyroid problems and she was denying that and not taking thyroid supplements. here are some parts of an article that deal with the consequences of untreated hypothyroidism:

Hypothyroidism is a potential etiology for multiple somatic complaints and a variety of psychological disturbances. The physical complaints are primarily related to metabolic slowing secondary to lack of thyroid hormone. Psychiatric presentations include cognitive dysfunction, affective disorders, and psychosis.
The manifestations of hypothyroidism are varied and, to a large measure, age dependent. These abnormalities may range from global developmental abnormalities to acute metabolic derangement. Hypothyroidism is usually represented in the literature as a stereotypical cluster of symptoms, most typically fatigue, cold intolerance, dry skin, hair loss, menstrual irregularities, and constipation. Commonly recognized signs may include hoarse voice, bradycardia, nonpitting edema, facial puffiness, slow speech, and delayed relaxation phase of the deep tendon reflexes. In addition, psychiatric disorders often accompany hypothyroidism. Mental status examination of a hypothyroid patient may reveal a broad spectrum of dysfunction, ranging from mild attentional impairment to significant agitated delirium or psychosis.The onset of signs and symptoms of hypothyroidism is often subtle and develops gradually. This progression is particularly true in the elderly, in whom presenting signs and symptoms can be both insidious and diverse and are often attributed to aging. Hypothyroidism is a common disorder with highly variable presentations; no predictable progression of symptoms is apparent. Accordingly, diagnosis may be difficult at times without a high degree of suspicion. Only registered and activated users can see links., Click Here To Register...]

it seems your mom has some clarity, but sometimes when you describe her, it sounds as if she's making things up. i just remembered the thyroid prob and maybe you can see if this fits your mom. if your mom had dementia, she would probably have more serious problems cause she's been this way a long time. this is just for your info and not a diagnosis from me. you'd have to get your mom to a doctor to see if this was her prob and it doesn't sound like she is willing to go to one. good luck. maybe your sibs could get her to go?

thank you for caring and sharing and walking with me ,
jeannie

[Buttons2]

thank you Jeannie, yes I know not taking her thyroid meds is probably the reason for her mental problems. she has refused to take anything for years now. I told her to gain some weight-she said she feels good in spite of the fact she's so darn skinny. no idea what she weighs but guessing way under 100# and has no boobs now.

My sibs are less than worthless. brother will be wanting her gone & sister stays so drunk can't even have a conversation with her anymore. sad situation all around! neighbor knows the family dynamic's enough to keep her eyes open. it's sad all around but I'm letting everyone know mom's not herself anymore & ready to go after my brother if have to-legally.

[houghchrst]

((((((((Jeannie)))))))))

[joy]

just thinking of each and every one here. (((HUGS))) and hoping for the best and knowing even if you get the best, it is still hard to bear.

[Jo6]

You are so right, Joy. When we get to this part of our journey it is very hard to know what the right thing to do is. We just hold our shoulders up and do the best we know how to do. That is all the good Lord expects from us. I believe what Jan says when she says God has her back! We can't go wrong, eh?

Pati, I know the distance is a problem for you, but you are doing a great job, considering what you have just gone thru. I know it hit you hard when Lori passed on. You carried the load there too.

Just know we are here, call on us any time you need us. Jeannie is also going thru such a hard time right now. My heart aches for both of you. Some of us have already been down this road and will probably go again, but it doesn't make it easier for you 2. Joy, you and I did the best we could, but it never felt like enough... yes, even the best is hard to bear.

My love and many prayers go out to all of us, our group of friends that feel like family ~~~~

Julia

[tic chick]

hey everyone!

i went to visit my mom yesterday. she was sitting in front of the nurse's station at the elevators...i missed her when i walked out of them and i had to look around for her.

the first thing i noticed was that the tops of her feet were very swollen! how could anyone put those socks on her and not notice her swollen feet? so i was wheeling her back to her room and i stopped at the nursing station on her side and told the nurse about her feet. then i took my mom to her room. she was really agitated and was yelling out words i didn't understand. i talked to her and tried to calm her down, gave her some kisses and hugs and she pointed to her stomach and said some gibberish about "not good". those were the only words that made any sense. then she put her hand on her head and said, she feels like her head is going to (and then she made a motion of her head dropping), so i took that to mean she was dizzy. another nurse came and i told her my mom seemed to be very agitated and her stomach and head were bothering her and her feet were swollen. the nurse said she had been on lasix (water pill), for 10 days and the doctor had just stopped it a few days ago. so the nurse says to give her ONE freaking pericolace (a stool softener) and ONE freaking tylenol! my mom kept wanting to get in bed and finally 10 minutes later an aide came and helped her into bed.

the first nurse i talked to came back and said they were going to take her vital signs for 24 hours and check to see if she has a bowel movement within that time. this nurse is new and i told her about the polyp my mom has and that the doctors had said that if it got bigger, it would block her from having a bowel movement. i also told her my mom has congestive heart failure and she has to be checked for swelling. i also asked them to check her for another urinary tract infection.

i don't understand why this information is not the top sheet of paper in her chart and why it is not there permanently! it is an important piece of health information! there were a bunch of new people there...again. i see only 4 or so people there that i have known for over 2 years! they even have a sign outside the building advertising for help wanted! it makes me sick.

the last 2 months that i have visited my mom, she seems to have had a steep decline in her speech capacities. she talks gibberish, words that do not exist except in her mind. yesterday she was opening her eyes wide every so often, i think she was in pain somewhere and the only places she pointed to were her stomach and her head. i'm going to call the nursing home about 1:30, it seems like things quiet down a bit after lunch.

i am going to call my brother tonight and see if he has observed anything. i have a lot to think about. i ask you all to think positive thoughts that i will make sound decisions.

thank you for sharing and caring and walking with me ,
jeannie

[Jo6]

my dear Jeannie, it seems your Mom is losing ground way too fast. I have been thinking about her so much lately. I do wish I were closer so I could be near and help in any way you need. I don't think I'm making much sense right now, but the fact that your Mom has been on my mind so much lately I'm thinking she is not doing so good.

I hate those Nursing Homes, they give the patient's 0 attention!! Sweetie, I'm not trying to scare you, I just want you to know I care and I'm here. Ken cares too. We had a long talk last night about your Mom. Ken feels like you all are his family too. We have been thinking about Pati also.

I hope the Dr. will give you some time and let you know just where you stand. They owe you that! Do you have to ask for an appointment to talk to the Dr.? If I were you I would ask to see the DR. I would try that and see how far you get. If that does not work I would ask around and find out how to get in touch with the Patient's Advocate. Surely they are close by.

You know we all will have warm and loving thoughts for you as well as your Mom. I keep hopping your brother and sis both will give you much love and try to help you out. Nobody should have to go through something like this all alone!

Just know we are all with you and we aren't going to leave you!

In the mean time please know we are here to help you keep it together. Also dear Pati, we are here for you too. My prayers and love will be coming your way.

My love to you all, Julia ((((love ones)))) Jan, love for you and Hank too. s

[tic chick]

julia ,

thank you for your wonderfully kind words. i know you're not trying to scare me, i really had no great hopes that the nursing home would really do more than basic care for her once her dementia advanced. it's just been one incredibly hard journey. thank you for being here and i thank you and ken for thinking about me and my mom .

(((hugs))),
jeannie

[JanM]

Hank is getting more and more repetitive, he is asking the same questions more often. We were at the VA for a doctor's appointment and the doctor pointed it out to me. I guess I didn't notice because I'm so used of him asking the same queations over and over again. I am taking him to the VA tomorrow because he had fallen 5 months ago and hurt his R shoulder and it is still hurting.The VA is going to re-xray it. I am having a friend go with me. In a way it is a way I can explain why he is at KLM. I tell him it's like a hospital and they are trying to fix his shoulder. He put up a fuss when I leave so I had to have a nurse or aide talk to him when I left and he would forget about me and I could go without him getting angry. Since I am a Hospital volunteer, now I tell him I have to go and work at the Hospital gift shop. When ha asks when I'll be back, I tell him that I will get off 4 hours later. He accepts that. One day he had gotten out and was trying to get in different pickups in the parking lot.

I have lunch with him ever so often and will eat with him this Thanksgiving.

[tic chick]

((((jan)))),

thanks for the update on hank.

you seem to have found the successful tactic of diverting hank's attention from you when you're leaving. that's a big help. i remember the prob i had with my mom at this stage...she was always tryiing to get out of the nursing home and that's all she talked to me about.

it's nice that you have lunch with hank every so often. personally, when i see the food they serve at the nursing home, i lose my appetite. i wish i had tried harder to get my mom out of the nh to go to a restaurant nearby for lunch every so often, but walking any distance was too difficult for her and i didn't know if the wheelchairs in the nh were foldable.

it's nice to see you here ,
jeannie

[tic chick]

hey everyone !

i went to see my mom at the nh last thursday. she was in the dining room and had just finished eating. her feet were still a little swollen, but not as much as the last time i was there.

she gets agitated a lot from whatever, i don't know. i wheeled her from the dining room to a different dining room that only had one person there. she looks at me and she says..."blah...blah...grandma...blah...blah...baby " (the blah, blah is stuff that doesn't make sense). so i'm thinking she MIGHT know who i am through her purple haze. she touches my face and kisses my hand and touches my hair and smiles at my red sweater. then she starts shouting for no reason. she finally falls asleep in her chair and my daughter and i walk out quietly.

that's pretty much our visits, lately.

i am supporting my friend whose daughter died a few weeks ago. i am dealing with my own grief about that, so i feel i can talk freely with my friend about that sadness. my friend says she was glad i just came over to help. she thought i was a calming influence to her and her son who were taking care of her daughter during her final days. her hubby had to work, but spent time with his daughter after work and before he went to bed. it made me realize how peaceful the hospice experience is for the patient. you know they are going to die, there is nothing more to do. why not let them spend their last days at home, surrounded by the love of family and friends? i saw how the body slowly shuts down. she didn't ask for food and she didn't ask for water after the second day she was home. then she kind of slipped away....

i hope i can bring my mom home for her last days. that is what keeps me going.

thank you for sharing and caring and walking with me ,
jeannie

[joy]

I think it is good that there is hospice. we recently had a new place to open here in our town. it is nice. I am hoping that it will be a peaceful passing of your mom. I thank you for updating us about her. I know I think about you and her and wonder how things are going. I know it is not easy for you at all and so it is extra good of you to keep us updated. I know it makes you relive it all whenever you do post and update us. (hugs) Your mother is lucky to have you for a daughter.

[Jo6]

To those that care for a Loved One my prayers and love goes out to all of you. My MIL passed on about 3 years ago, but I was thankful she was not in pain and confusion anymore.

As I go thru the different forums I read about other caregivers. It is a very sad situation, especially when it is children and young people.

As I go over the LO's that post here my heart ache's for all. The same goes for those that just read. We invite you to join us here, but if you had rather just read I pray you can find things to help you along your path.

Please take care of your selves, that is most important. I'm around here most times so if you need me please send me the message.

My love goes out to all that is going down this road. .may God bless us all.

Many s to all, Julia

[Buttons2]

cant rember when i last wrote about my mother or my housemate's state of mind & where you draw the line teween dementia & alz. i have notied a huge difference in hos my housemate acts. as for mom she is just dingylong as she knows who i am i'm ok with it. my own mind isnt so good these days anyway.

hossemate is always forgetting things he blames on me. where to draw the nine betwwn schizophnrenia & lsing your mind totally? no help avail there for sure. not esy to handle for sure. i say hanlde canuse that
is all i can do.