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Noticed moms having trouble sometimes with finding a word...and sometimes using the wrong word...new symptom. Also was over the other day and i said, hey lets make a pan of brownies! (The box had been in her pantry for months and she used to make them ALL the time). I got out the box and the pan...she stared at the instructions and did nothing...she couldnt follow instructions. I just had her get the items...egg, oil, water...and i did the rest. I know she cant balance her checkbook anymore and ive been doing that for 6 months or so, but this is the first time ive seen this symptom of not comprehending something even though she can read. Its so hard seeing new symptoms arise...each time, its like being kicked in the stomach. Sad that people are being kept alive longer by medical advances and yet the quality of longer life cant be enjoyed because of these diseases. Were having a birthday party for her on saturday...86 yrs old.
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I take care of my 87 year old mother who has chf, a-fib, copd, etc. now she hurt her back by doing something changing her clothes that I should have helped her with if I had known what she was doing. I happened to be on the phone at the time. So she got inpatient and says "she didn't want to bother me." Well she hurt her back and is in a lot of pain and on pain meds for the pain in her chest and her back. The hospice nurse also believes she had cardiac dimentia or is starting to. She is not totally immobile yet. I am finding myself not wanting to do this any longer. I am at my wits end. She is under hospice care at home. They are great. But I am her main caretaker. We both live with my sister and her husband right now who both work. I am essentially on my own. I have weekends off thank you God. I don't know how to tell my siblings that I do not want to do this anymore. I want to be able to go and visit her and not be her caretaker. Just see her as my mom and my as her daughter. She is probably going to be devastated. I feel so guilty feeling this way but it's the way I feel. I want to be done with it. Any suggestions?
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Question. Saturday my aunt (mom's sister) and uncle are coming to visit my dad at his AL. They are being driven by my cousin and her husband. I am planning on using the sunroom for the visit as I do not have enough seating. Do I bring refreshments as they are coming at 3:30 in the afternoon. And of course I now my uncle has dietary restrictions due to kidney failure and having a colostomy.....
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Maldorasi, can you discuss how you're feeling with the hospice providers and ask them for more support?

57twin, isn't there anyone at AL you can ask about catering for visitors? They might even have caterers they can recommend who can handle the dietary requirements - and besides, it might be courteous to give them a heads-up that there's a potential bathroom crisis on the way..! But I hope the visit goes really well for all of you :)
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57twin, I'd talk to the AL's kitchen manager. My mom's AL will provide pitchers of ice water, carafes of coffee and a tray of cookies for meetings and visitors if asked. I imagine there's a minimal charge. Never done it myself but I've noticed other families doing this in the bistro/sunroom where she lives. It sure would make it easy for you. :)
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Sinus/allergy bad today. My boss and I have this problem. Today, he had it bad. I kept massaging my face - delaying the sinus pressure. Boss had to leave early at 1pm due to a very bad headache. My headache was crawling up all afternoon. Right side face, head. Press my face, feel squishy on the nostril and cheeks. Drank lots of water...couldn't remember why just know that I should.

Boss still have not approved my vacation leave. On Monday, I will ask him if he's still thinking about it....
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Im anxious today Mum has had 3 seizures, is in hospital and noone will tell me what that actually means in the grand scheme of things or perhaps its just another hurdle on the road to wherever that road leads. The one thing that made me mad and smile at the same time was when a doctor (clearly of a school where he truly believed patients should do as they are told) said to me quite aggressively...does she understand orders...I obviously gave him a weird look...he altered the question to cant she follow commands? ...I smiled sweetly (always a time to know that you are on dangerous ground)... " My grandmother marched in favour of the suffragette movement....the likelihood of my mother (or me for that matter) following orders / commands of the like you have just given are absolutely nil. If you want her to do something I suggest you start speaking to her like a human being not a chattel" ....as I was just finishing my verbal assault (doctor was clearly amazed I dared speak to him like that and turned to face my mum) my mother swung her fist into his face - now she had no force behind it she was waaaay too frail today having had 3 seizures one after the other but his face was an absolute picture. Arrogant toad that he was. Most of the doctors she saw today were not from our country but were an absolute delight - this one clearly brought his culture with him and paid the price .....one quick glance round the ward showed at least 2 doctors and 3 nurses sniggering so I imagine he is always like that.
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Jude, good for you! Soon after I started caring for my Mom I wrote ber doctor a letter about how frustrated I was with trying to figure oit whatnwasngoing on with her! I also thought he should be more abreast of research in AD. I had heard about two different studies and this geriatrician hadn't heard of either one of them. They are supposed to let patients know of advances in the field. Isn't that their job? So many feel all that is necessary is to take vital signs, put them on a scale, call in refills for prescriptions and check for UTI's in case of sudden behavior changes.
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Well dad had is visitors today and I am sure he did not know who they were :(. Did not need all the vaked goods either- well they are taking them home. Dad pretty much said nothing which is pretty much standard for him though when I came to his room he was watching The Masters on TV! First time I can ever remember him watching golf. But my aunt and uncle were not talking too much either- my cuz and I did not of talking. The leaving went ok- that is dhat I am always concerned about.
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My Mother in laws kidneys are failing. I know they told us in the hospital last week that they were really bad. There will be no dialysis, for her having the 3rd stage Multiple myeloma and her heart is very weak, being 85 I wouldnt even dream of letting the doctors talk her into that one! They already have wreaked havoc on her thin frail body by putting her thru chemo when there is no cure for Myeloma and then another form of treatment, and now steriod treatment. I ask them when is enough -enough? They said to me well with no treatment how long do you think that will last? I said I dont know...how long do you think she would last yourself? They said they did not know. Who is trying to play God here? I have noticed some strange things in her behavior in the last few weeks, she has stopped eating meat totally...and her body had been itching like crazy. I thought it was from radiation she had 2 weeks ago...but come to find out these two things are symptoms of last stage renal failure. I went in on the internet and typed in various methods of "End of life, Cronic kidney failure-and end stage renal failure symptoms" out of the 10 basic symptoms I could count 7 truthfully- so now me and my husband have decided not to tell her anything about it-because it will only create new anxiety in her feeling like she is dying. We have also decided not to involve any more doctors unless it is a regular appt they have already made for her. We will try our best to give her the least painful death with Palative care and when its definately time, we will call hospice which I feel will be within a week or so. If anyone knows more about the kidneys please tell me of your experience. I know its not looking good here. She is coherent, but her mind has been wavering-she is getting mixed up an dreaming alot of weird things.
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gawomen, I'm not familiar at all with this. I agree that it's best to not let her know that her body is shutting down. I'm sure, deep down, she knows this. Just be there for her so she knows she's not going at it alone. I guess it is true that all those abuses she vented to you was her vent towards how her health issues. You just happened to be the closest one there for her - to get the brunt. You're a real trooper. {{Hugs}}
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Gawoman you are making all the right decisions. It is time for hospice now not in a few weeks. I don't know what her blood work looks like but the Drs do and should have given you a probable time line. Now nothing is set in stone but it is not fair to leave a patient out in never never land there may be things that need to be done such as legal paper work and people she would like to see before the end. Now I am not suggesting you tell her that would be very unkind but if she asks she should be told the truth as gently as possible although she probably already knows. If you get hospice now there will be no need to drag her to see any more Drs so I would advise you to call them tomorrow. If you think that would scare her you can wrap it up a bit and tell her you are calling visiting nurse services and they need to send someone out to find out what kind of help she needs and and whether she would be more comfortable in a hospital bed, things like that. if she asks you can just tell her they usually come in when the Drs say more treatment would be too hard on her and she will be more comfortable looked after at home. Without seeing her and and not knowing the facts from your description I would guess she does not have more than a couple of weeks and she will decline very fast during that time and need 24 hour care. Now remember this is a guess based on my experience and not written to frighten you but you seems to be seeking answers. When you call hospice they will tell you what their evaluation is and how things are likely to go
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If I had it to do over again I would not get Hospice involved get a good Visiting nurse and an aide who can do cares and meds if necessary Hospice was not helpful for my brother and were even annoyed that they were called too often to visit his home-you have to hire your own aides anyway and the first agency was horrible-the first aide was horrible and the second did not even have training to empty a urine bag and the third aide from an agency suggested by Hospice did not know the signs of end of life a regular aide is 200 dollars a week and an aide who can give meds is 500 dollars a week extra the Hospice nurses who did come in only wanted to come to the house once or twice a week and as I said were upset to be called in more often an did not give the wife support or even explain his time to pass was close- and when they were there mostly did paper work and only spent minutes with my brother-I was very disappointed with Hospice because I had heard good things about them in the past.
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I am truly sorry for your hospice experience with your brother 195Austin. That was awful.

Our experience with my dad was the complete opposite. They were totally supportive and available 24/7 and there were no charges, even for meds.

I guess, like in all of life, their are good services available and bad ones. If someone has an experience like you did, I would strongly encourage them to switch to a different hospice provider. My condolences on the loss of your brother.
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Couldn't find my iPad last night I remember taking it to Dad's thought I grabbed it and just came back from a short visit as it was in his room.
One of the aides mentioned to me that dad was very upset yesterday as his new theme seems to be that mom died but he didn't go to her funeral. I asked what TIme this occurred as he was fine at 3 pm. She said after lunch until probably shortly before I arrived. Then it started up about 5-8 pm. I told her my aunt and uncle came at 3:30 and perhaps seeing my mom's sister triggered it? It seems to be his short term memory is getting shorter and he is having more of these upset episodes. Another stage into Alzheimers? I asked him to sit outside for a while as it will be nice and I do not work tomorrow so I will pick him up and we can go for a walk.
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We had a surprise birthday party for my moms 86th birthday yesterday at a little restaurant she likes. I told her it was she and I going, then some of the family was already there and surprised her. It made her happy to have some family around...a couple grandkids and great grandkids. My sister, who has had a few strokes and also has cancer, was able to come. My other sister passed 10 yrs ago, 2 grandsons died of overdoses within the same year 2 yrs ago, 1 grandson is currently in a rehab facility, and one granddaughter is not around because shes an addict, and 2 other grandchildren havent been around for years.. So the remainder of the family was there and it seemed to make her happy. I did notice that shes having trouble now remembering who is who...which is troubling. Im glad we had the party for her since I fear by her next birthday, she may not know some people at all. Scary and sad thought.
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Let's see, how do I feel today? Do I feel?? I feel like I just DO and DO and DO so there's no time to feel. Still no luck finding 24 hour care, still doing bed baths on a 94 Y/O 167 pound baby, still trying to get him to eat a meal at least once a day, still coping with his legally blind wife as well, still taking the complaints with a smile (I lie), gave up trying to get him to the bathroom on time (when we get there we get there, then I clean up everything in between), still cooking what he doesn't eat, still putting the TV on to what he used to watch but hates now, still loving him every minute of every day. That's how I feel.
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I really sympathize with all the caregivers here. I know it is the hardest thing I have ever done. My Mother in law is dying i think, her brother died with the same cancer two years ago. He did not have kidney failure but she has chronic kidney failure. Just over the last week I started noticing things that she did and I googled it and realized this was related with end stage renal disease. She seems to get lower everyday. She has a doctors appt on tuesday with her cancer doctor. I have no clue whether she will be able to go. She has trouble walking now. She is very weak and wobbles with her walker. I follow her around because she is almost falling because of the weakness. My husband and I had agreed to just let this be the way she goes because she has 3rd stage Multiple Myeloma, (end) Chronic kidney disease, major heart disease, and congestive heart failure. I am beginning to wonder if this is soon. a Doctor once told me that death has no time table but I am getting really fretful over this because I hate for her to die with just me here at the house by ourselves. I think once the doctor see's how bad she is he may tell me to call in hospice, but since he is still trying treatment it is not an option or her treatment will be terminated by him immediately. I'm just trying to do what all thinks I should do. I'm being patient. Just trying to get her through this life with her wishes to be done. i need prayer in my caring for her. Please think of me in the following days.
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Prayers sent for you and MIL gawomen. Hope she is able to make it in to the doctor on Tuesday. You need some answers. With all of her maladies, I don't understand why the doctor is trying further treatment to 'cure' something.

I hear you about a loved one dying alone with just you. It was beyond my personal skill set. My dad spent his final days at a hospice house with 24/7 care. Of course we were there too around the clock, but they specialize in the dying and made it not so scary. We could just love dad and hold his hand and be there for him, honor him, without all the physical aspects that come with dying from cancer. It's not pretty, in fact it's awful.

You sound like a strong woman. I am too. Sometimes you just have to know when it's time to let others share your burden. I will be thinking of you at this awful time in your life. ((Hugs))
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My aunt had kidney failure and no dialysis, she lasted about two weeks at the most. She was 97 and passed on in her sleep with no struggle, just stopped breathing, very peaceful.
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Thank you Windy and college. I need all the reassurance I can get. like I said, I am only trying to do what she wants with the treatment. Last week we told them that we had called home health care in and they said well-why not hospice? I told them I wasn't sure she would want that cos she thinks Hospice means death immediately. So she let them talk her into the lowest treatment they would do. Otherwise they told us we would have to go to hospice. She wants to live-not satisfied with the 85 year she has lived. 5 years ago she was a picture of health. but not any longer. She is worn out and tired. I think she will go over the next few days. almost all the signs are here with chronic kidney failure. Thank you ladies for you comments. I really need them right now.
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We have also had good experiences with hospice. They would tell us everything that was going to happen and when they thought the end would come. They were a blessing to our Family. Two of my cousin's with each one it was their husband. One had cancer and the other Cerosis {can't spell} of the liver, but with each one they were telling us they saw angels, loved ones and one said he saw Jesus and he didn't look like we thought. H passed on before we could question him. Very peaceful. Hugs & prayers
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57twin – on the last party my oldest bro had (about 2 weeks ago), some of mom’s siblings came over to visit my dad. Even last year, when relatives would visit, they would ask my dad if he remembers them. He would say no. I’m sure this happened again when they visited him. Later that night while I was changing his pamper, he told me that so many women came to see him. I asked him who visited him. He said that he didn’t know. At least last year, he would still remember who came. This past one, he doesn’t remember.

Sheryl, my dad used to know my nieces’ names. These nieces babysit him every Saturday from 830am – 300pm. He calls one niece Debbie (not her name). It’s funny because her former boss also has Alzheimer. Like her grandpa, her boss also called her …Debbie! She’s so used to my dad calling her Debbie, that she also automatically responds to that name at her work. Lately, my dad’s been forgetting my name. He would ask me in frustration, “What’s your name?” When I tell him, he says that he used to remember my name but now he has problem with his (then he points to his brain.)

Gawoman, I know what you mean about being alone when someone dies. I was like when mom was dying. I should have stayed home but I fled to work and let my siblings from the mainland take over watching mom. They were the ones who ended up speaking to the police Unfortunately, there was a time discrepancy between when anyone last saw her alive, when older sis thought she died, and when they called 911. Older sis knew she died but was so scared, she didn't call 911. Instead, she spent about 10 minutes trying to warm up mom's cold body.
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Austin, when mom had hospice – several times – then mom improved, our hospice sounds like the one your brother had. I remember the nurse giving us pamphlets (which I didn’t read) and emphasizing to call the 24/7 emergency number when mom is close to the end. Do not call 911. The problem is that no one took the time to verbally go over it with me and dad about the ending of life. Several times, when mom’s legs turned super black, we called 911. There was that time when her hands turned black – I called 911. No One took the time to explain to me that when the limbs were turning black, that it’s mom’s body shutting down. I thought she had gangrene. I remember telling the 911 operator that mom was struggling to breathe and listen! (then I put the phone next to her.) And that her hands are turning black and spreading. No One told me that she was shutting down. Poor mom, we took her in the ambulance, hooked her up with IV and spent several days in the hospital. I just wish that hospice had taken the time to Explain Things to us. And like you, I wished that they took the time to drop by and just see how we were doing. Actually, no one explained to me what Hospice was. I actually learned what it was – here on AC!! I thought hospice was another word for home care nurses
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My sinus is acting up. My front face is squishy. This morning, I moved my eye balls from the paper up to my computer, and my eyes made this squishy noise. Ugh! I will go back to trying the Apple cider vinegar with warm water for the next few days.

I did some googling. In order to conquer these sinus infections/problems, I need to find the cause.
1. Bathroom still has mold way up top near the ceiling. I cannot reach it - being short, under 5 feet tall.
2. I'm going to start decluttering my bedroom, stop hoarding stuff since it's gathering dust and silverfish.
3. Neti pot
4. I may need to find out if I'm allergic to gluten, processed sugar, starches, chocolates, caffeine, dairy, etc... Gees, I might as well just starve to death. It rules out practically everything!

The sinus massages work. BUT, I still feel my head is stuffed up. My ears are ringing, and sounds comes and goes. I went to Kmart and another mall, and the hand air dryer was soooo loud, my ear was hurting so badly. This sinus head pressure is either dulling sounds or amplifying it. It's strange to walk around with clear nasal passages yet my head feels so stuffed up. Weird.

So, I googled again. I have done this several times for the past year or 2. I just need to refresh my memory. I never realized that some people found the Mothers Apple Cider Vinegar (ACV) had not helped their sinus or made it worse. When they used the Regular ACV, it worked against their sinus -problems. So, I'm going to try it. I also learned that I was doing it wrong. I was using cold water from the fridge. I should have been using Warm Water! My goal now is to try to release my head pressure using ACV, water and honey. (I need the honey hoping it won't make my GERD/Acid Reflux flare too badly.)
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Stopped at Dad's today we were going to go for a walk but has been extremely windy so will have to postpone. While I was there I received a fun little certificate for being a family volunteer! That was a nice surprise.
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Here in new england hospice means you no longer can call 911 and go to the hospital OR you pay!
You have to call hospice. They didnt help me ,I canceled them. I like my moms doctor and dont want to payout of pocket for him. To me they were a nuisance coming when they wanted and not being there when you really need them. I think if mom was dying i would have them for meds to die at home but not until then.
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Gawomen, I am so sorry. I am thinking of you and saying a prayer for peace, comfort, wisdom, and strength.
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I walked in the sunlight for the first time today
Heard dads voice on the breeze and smiled once again
Saw Granpops and granma sat on the bench in the park
Smiling and happy together

My aunts and uncles were all there too
Even my cousin hes the lawyer dressed in blue
There was laughter and singing and food and wine
They were all happy together

I walked in the ward and saw mum today
Shed been with dad all night she says
Hed been there right in the ward that and called
She was happy once more

I left the ward in tears today
For soon she will realise she is still alive
And she wont be with Dad which is her eternal wish
And I cant help her
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Update.
Lastnight, I did the 1 C warm water with 2 TBS ACV + 1 TBS honey. I sipped it until done. I didn't really feel any difference with my sinus.

This morning, I was running late. I need to do the ACV drink twice a day. So, I quickly did the 1C water and 2 TBS ACV, warmed it 30secs in micro. Drank it down so fast because I'm late. Wham! Ow! That just burned my throat while going down, and then the 'fume' flared right back up to my head. Oooh... Something cleared in my left side of the head that I have NOT felt any sinus pain/pressure there. Throughout the day, something felt like it was 'popping' in my head. My face still felt squishy with liquid inside. ...

Uhm... I also started getting tingling lips. No! No! I'm not allergic to ACV, am I? I'm using the Mother's unfiltered ACV. Maybe I'm allergic to something that's floating in there? So, I stopped by the grocery store after work and bought the Filtered ACV. I took the same dosage like this morning. No dramatic effects like the morning dose. I guess that Mother's ACV is very potent. I'm really hoping I'm not allergic to the filtered ACV... I do get large bumps on my upper thigh if I drink 1 small box of apple juice a day. Let's see....

It seems a lot of people here on island are having sinus infection. Very breezy, rainy, and mango season. My boss' own got worse - in severe pain - he had to go to the clinic yesterday. I'm sooooo glad that I've been self-massaging my face, drinking lots of water and now trying the ACV to control my sinus/pressures. Too bad that I cannot use the Unfiltered Mother's ACV. That is so potent!
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