I'm tired of cooking/preparing 3 meals a day. It's just the two of us but boy oh boy can that woman eat!! She stays slimish, I get fattish. It's bad enough I do everything here much less start making her one thing and me the other. At times I feel guilty when I buy her fast food cuz of the nutritional value....not to mention I eat it too.
My husband was taken to hospital yesterday, in ER still today as there are no rooms available, probably is going to spend another night in ER even though he has been admitted as they need to figure out what is wrong with him.
Today I was terrified when I went this morning it showed very high blood pressure and it was completely ignored and his is always normal.
Found out he has mild pneumonia, but the reason I called ambulance yesterday was multi symptoms the biggest one being he could not walk almost felt like he is paralyzed, and today they already are giving me the same old story: It is all because of Parkinson’s disease.
Well, I am ready for a fight as he had his reg quarterly check up with neurologist last Thursday who after exam declared that his muscles, reflexes etc are strong and even suggested it is OK to make next appointment in six months, as she does not expect any drastic changes. And changes don’t happen so drastically in day or two, at least not to that extend.
So by Saturday he became weak to the point he could hardly walk, by Sunday even worse. If I was to give uneducated non medical opinion, I would say this has to be related to his back pain which became unbearable in last month. Or tumour or spinal damage. Waiting for doctor to call me as requested, I know I am going to demand second opinion.
I am taking a little break and going back to hospital soon, just need to vent before I have to face another fight, they already blaming it all on Parkinson’s.
Oh and thank you to all for letting me rant .
Everyone should follow your friend’s advice. Too many of us were saddled with feeling like we had to do something more. Your friend had the right idea!
When did you last do something just for you?
You need to care for yourself and have compassion for you as much as you do for others. You are as deserving as anyone else of your time and energy.((((((hugs)))))
I understand that you feel bad for fil or anyone else in his position. I feel bad for them too but I also have to look after me. Fil is a grown man and it is his job to look after his own feelings. You can take an hour or more for yourself. In fact, your need to or you will burn out. That's not going to ruin his day, but it may ruin you if you don't.
I learned a lot about this from a friend who died 10 years ago in a traffic accident. She was very much a "what you see is what you get person". Her husband had terminal cancer and was in hospital.
She took mornings for herself - to read her newspaper, and once a week to meet her g'fs for coffee. It was a standing arrangement and I could drive down from here (5 hr drive) and know on that day they would be there. It was great girlfriend time.
I went to stay with her for the last weeks of his life. My friend told me she knew that her dh would have preferred her to come visit him earlier in the day, but she needed mornings for herself.
They were a very solid couple - really had been together since grade school and loved each other dearly.
But she knew the value of looking after herself. It was a lesson I have never forgotten and have benefitted much from. I'm passing it on to you.
We certainly don’t know when people will die. I have had interesting conversations with others, especially hospice nurses about this.
My brother died the second I left his room when he was in hospice. I would not have wanted to see him take his last breath.
I didn’t want to see my mom or dad die either. My brother was with my mom and it was important to him to be there so I am glad that he was.
My other brother happened to be with my dad when he died. I went to see them often but too be honest I didn’t want to see them die.
I think my brother waited for his children to arrive from out of town. The hospice nurse was surprised that he was hanging on for so long. He was so happy to see his children. He rallied and then faded.
My cousin had a dream about her mom dying the night before she died.
My mom rarely went out to lunch with friends. She was a homebody. Her sister was a street rat! She loved going out with friends. They were polar opposite of each other.
Anyway, mom’s friends asked her to meet them for lunch at a nearby restaurant. My grandmother happened to be visiting her at the house. Grandma said to her, “Go ahead and go. Enjoy lunch with your friends. I will eat something here and see you when you return.”
Grandma went to the bathroom. Mom was running late and didn’t have time to wait for her to come out so she could kiss her goodbye. Grandma died suddenly at home with me dad. She was DOA when she got to the hospital. Her heart just stopped. She hadn’t been sick.
Mom felt so bad that she hadn’t kissed her goodbye or that she wasn’t home.
I told mom that she had been a wonderful daughter and grandma knew how much she loved her. I felt like grandma wouldn’t have wanted to die in front of mom. This happens all the time. A person will die after someone leaves. I bet you saw this as a nurse.
Fil is being cared for so someone doesn't have to be there every day. Very nice of your ds and dd to try to fill in for you.
If there is any emergency the staff will look after it and let you know,
Prayers that comes back Wednesday and that you have some down time. Do some things that are good for you. I want to hear about them!
I can see FIL tomorrow . But Tuesday I can not , I’m driving a friend for outpatient surgery an hour away and staying overnight with her for a few days to help . I hope DH comes back Wednesday . I think my son and daughter are trying to work out meeting there Tuesday or Wednesday to see FIL.
The case manager is supporting you, which is great. Depending on what happens in the next few days. Fil may be released to a SNF which sounds like the best for everyone. No one wants to go to a facility that they know is their last stop, so to speak,
Hard timing with dh away and you having to deal with this now. I'm sorry. This is a tough time for families.
((((Hugs)))) and please keep us updated. You are in my prayers. 🙏🙏🙏
I just hope FIL doesn’t leave earth before DH gets back . I don’t think he will, but you never know for sure . Something sudden could happen .
I am sorry that you are dealing with this issue alone. It’s never easy to be in these situations.
I’m sure that your DH would be there with you if it were possible.
I agree with starting to look at facilities that you feel would suit him best.
This is hard for all of you. Wishing you peace during this difficult time.
I also spoke with the case manager who was outside FIL room this afternoon on my first visit today , idk if she was hanging out a bit hoping someone would show up . We spoke about possible SNF on palliative care. She said she was also thinking he’s headed in that direction . But she said probably a few more days before making that determination for sure . I told her I think unless he improves significantly from his current status , PT rehab would be too much for him even though he did well in March in rehab. She agreed , but cautioned to see what happens in the next few days and what the doctor says of course , I agree . But she agreed it would not hurt to start considering what SNF we would consider and checking availability .
I was astonished at how well my mom did in rehab and home health. She worked incredibly hard.
It’s interesting because I remember her home health nurse saying that if they don’t show any improvement the insurance will no longer pay for coverage.
I was quite surprised to see how intensive the work was in rehab. They were served breakfast, went to exercise. Had lunch, back to exercise until 2:00 or 3:00 in the afternoon. It’s a rigorous schedule.
My mom had been active all her life, wasn’t overweight and she was able to participate fully even in her 90’s!
I do have to say that mom had a crush on the handsome physical therapists! LOL 😆 I think she wanted to impress them!
Mom also had a thing for the firemen who came to our home to pick her up from her falls. Her nurse and I joked about that often.
Her nurse told me that all of the old ladies loved the handsome firemen!
Not everyone can do the demanding exercises in rehab.
When it comes time that it will do more harm than good, I feel like it shouldn’t even be considered. Let them be.
My grandpa was very active too. The smoking caught up to him in the end though. He suffered with emphysema in the end. He was 79.
Grandma was a woman who had deep faith and she prayed regularly to God, asking Him to spare her from suffering or lingering in her old age. I’m so glad that she didn’t suffer.
She and grandpa were married for almost 60 years and it hurt her terribly to see grandpa suffering at the end.
My grandfather went like that too, at age 81 after a healthy active life. We can only hope!
I’m glad you’re feeling a bit better today.
Way,
When I see or hear of people suffering in their elder years, I pray that I will go exactly as my grandmother did. Her heart simply stopped one day. She was 85, ten years younger than my mother when she died. Mom suffered horribly towards the end and would have preferred to have died many years sooner. She didn’t want to live to be 95 years old.
I don’t ever remember seeing my grandmother sick in bed. She remained independent until her death. Oh, if only it could be that way for everyone, right?
They tried to get mother to exercise at age 105. She had exercised all her life. I know if she could have she would have, but she had muscle weakness from the vascular dementia. They thought she was being difficult. I knew she just couldn't.
Can you talk to the doctor about SNF being the right choice for fil?
There have been comments here over the years about people being kept alive well past their "best by" date. That might have been the case with my father. He did have a few more years at home, though he was difficult to deal with as the dementia progressed.
Your fil is quite ill. May they keep him comfortable and let nature take it's course.
(((((hugs))))
And that Doc is the one that tells FIL .
I agree with no rehab for fil. It's what he wants and IMO it would be cruel to force it on him, and he wouldn't cooperate anyway. Actually it makes sense to me. In his condition I wouldn't want it either. I am sorry he is so angry and likely taking that out on you to some extent. I have found that even being in the presence of someone so angry is draining. Please look after yourself and curtail your visits if you need to. Do something fun/relaxing during this time.
I have found that acknowledging people's anger," I hear that you are very angry", goes a long way when dealing with angry people.
I hope the powers that be see that he is no longer a candidate for AL and needs SNF. It would be so much less disruptive for him and all concerned if he went straight there from hospital.
It does sound like he is winding down and getting ready for the big transition.
More (((((hugs))))
DH is on his way to California .
How is fil doing today? And how are you and dh?
need - Sorry about the wrong diagnosis of your mum. That was bad and caused a lot of stress!!! She was a healthy woman for years!!!
Re my father, I think the information was correct as far as the doctors knew. He showed the signs of EOL. It was the interpretation that was wrong. His heart and lungs were great right up till the end. That time they pulled him through, I guess.
When mother was in her last 6 months, the doctor there said all her vitals were good and she could go on for years. I knew she couldn't, as her brain function was declining, and even with a strong body, eventually that will finish you, and it did finish her.
If they had done brain scans earlier or something like that, and then done them again at that time, they would have seen increasing damage in her brain from the vascular dementia. It was progressing and she passed at about 5 years from diagnosis which is usual.
it does astound me that, in her case, the dr. only looked at her vitals. I know they were great for a 100+ yo. but he was an NH doctor for goodness sake. However, to be fair, she was a rarity. Yet the nurses knew she was declining as did I. She ate less, slept more and - just looked older and more frail.
Need - I don't know if they can ever, or perhaps it would be more accurate to say not often, be 100% certain. There are lots of factors beyond our understanding still in the practice of medicine.
Science and medicine are not all cold, hard facts. There is a lot of educated guessing going on. I used to tell my students at the beginning of a course, "I know you guess the answers to some of the exam questions, By the end of the course you will guess better." I saw a lot of wide eyes in class that day. lol
IBS better today, thanks all. I suspect it was the CFS/FM as my legs were aching from the night before and I was teary that morning for no particular reason. All part of that parcel. I will be careful today.
One of the original doctors that recognized and treated CFS/FM for years said, in his experience, he really couldn't say what triggered flare ups. The disease waxes and wanes on it's own path. Anecdotal evidence says weather is a trigger - as with migraines. People with it have found it is wise to pace yourself, avoid stress and overactivity, and to get enough sleep - if you can, she says wryly! All good lifestyle advice. Science doesn't know much of what is happening with this disease, and they haven't been able to link any of these things to what they do know.
No the stress doesn’t end . I feel like I had very little break between my parents and now FIL , when in reality it was a 3 year break .
My mom was rarely sick when we were young. In fact, she was the kind of person who didn’t go to the doctor unless something was wrong. Oh, boy in her elder years though, she lived at the doctor’s office!
The only time I even remember her being in the hospital was for her hysterectomy. I remember her telling her nurse that she felt like she was on vacation because she didn’t have to cook and clean! LOL 😆
Well, many years later she started to experience seizures and that sent her to the hospital.
There was a doctor who told my dad that she had liver cancer, which wasn’t at all true. My dad was heartbroken to be told this.
He went into my mom’s hospital room and she immediately saw how upset he was. She asked him what was wrong and he told her what the doctor said.
Mom was naturally concerned and wanted to know everything. Turned out that her enzymes were off but it wasn’t cancer! She was furious with the doctor for upsetting my dad.
A friend of mine was told that she had bone cancer and she didn’t have it.
How do these things happen? Is it because the doctor jumps the gun by telling the patient and family something before they have concrete proof?
I don’t want to be told anything until they know for certain what it is.
I hope you feel better soon. Your mom must have surprised you and everyone else with how long she lived. Sometimes, I still shake my head over how long you oversaw her care.
Way,
The stress never ends with caregiving. I hope that everything will go as smoothly as possible for all of you. These situations are never easy to deal with.
Yup, they bounce back sometimes . It’s amazing . Time will tell what happens .
This is his third time since January that he was lucky (? ) to have someone walk in his room and recognize he was in distress. Yesterday it was me when I brought him some dinner. .