Lodgedodger I need to talk

[sumas]

I am very very lucky to have all my sibllings here and close. Don't always agree but family support is always welcome. It is the loss of Moms'cognitive powers which hurts so much. God, it has been so rapid that it is a little hard to adjust.

[sumas]

Adversity does bring out the best in people. My sister, the attorney, has been stellar. I guess I'll have to give up telling lawyer jokes.

Mom really appreciates all the attention she is getting. She turns ninety on the 24th. except for the brain tumor, she is in great shape.

The hardest thing I ever did was to tell Mom, get treatment or die. Strangely, the microwave was important in this conversation. She can't figure it out anymore. It was a good talking point.

Her birthday, will be what she loves most. All family members will be in her church. Trust me, we will fill all pews. We will provide the eats for the congregation hour, then on to my brother house for lunch.

My Mom was born in 1920. She was very premature. Lived her first year in a chest of drawers, drawer. No one expected her to live. Now she will see ninety. Amazing, really!

[LodgeDodger]

Adversity does bring out the best in people. My sister, the attorney, has been stellar. I guess I'll have to give up telling lawyer jokes.

Mom really appreciates all the attention she is getting. She turns ninety on the 24th. except for the brain tumor, she is in great shape.

The hardest thing I ever did was to tell Mom, get treatment or die. Strangely, the microwave was important in this conversation. She can't figure it out anymore. It was a good talking point.

Her birthday, will be what she loves most. All family members will be in her church. Trust me, we will fill all pews. We will provide the eats for the congregation hour, then on to my brother house for lunch.

My Mom was born in 1920. She was very premature. Lived her first year in a chest of drawers, drawer. No one expected her to live. Now she will see ninety. Amazing, really!

I have plenty of stuff at home that your Mother might be able to use. Let me know when you're able to meet up.

[sumas]

LD, thank you so much. I have not mastered cyberspace yet but will try to PM my phone #.

We have many senior friends. Here is a silly story. MJ is 83. She has had a hugh problem with her legs swelling. I suggested she get those orthopedic stockings and her PT agreed. Went to the store and bought some for her. Get to her house to find out that you only get one in the package. I sure felt stupid!

Sometimes I over stress by caring too much. I am pretty sure that relatives of these friends worry that we are looking for their money. That isn't the case, but I am sure that is what they think we are after. Last I looked it is ok to just be nice people.

Be damned nice if those relatives were around to cook, clean, shop and do those pesky Dr appts, supervise PT visits and pharmacy runs.

Here is a wierd one. We call our ailing/senior friends at least once a day if we can't visit. Today I get a call from PAG's house. It's his nephew, questioning why we called. Huh????

I guess I am just a little angry. Where was he, when we shoveled all that snow so PAG could safely go to his chemo treatments?

Sorry, seems I have turned this into a rant.

Neither my husband or myself are health care professionals. People with needs just seem to find us. We help as best we can. These are lonely people.... we do our best to help as we can.

[Downtown Lady]

We have many senior friends...MJ is 83. She has had a huge problem with her legs swelling. I suggested she get those orthopedic stockings and her PT agreed.

Hi Sumas,

Has MJ talked to her doctor about the possibility of the swelling being lymphedema? That's often the case. If so, there is a specific regimen of treatment needed -- something called comprehensive decongestive therapy is often recommended, which involves a specific massage technique on the legs and a special wrapping technique, usually done by a CLT [[certified lymphedema therapist).

I am by no means a doctor or nurse, but I have researched lymphedema quite a bit when a friend's mother was dealing with it.

Just wanted to present that to you, as it might benefit MJ to ask about it. Here are some links, and there is a lot more information to be found on the web if you hunt around for it.

http://www.lymphedemapeople.com/wiki...ve_therapy_cdt

http://en.wikipedia.org/wiki/Lymphedema

[sumas]

Downtown Lady, thanks for the links. Taking MJ to a cardiologist on Thursday and will discuss.

LD thanks for sharing how you felt insecure as a care taker. I mess up but I try to keep learning. She was forgetting to take her pills but I didn't catch on for a few weeks. I told family and we are decent now at reminders. It seems at every turn that Mom gets worse there is something we aren't doing right. Family can be helpful and also make one feel like shit. Overall I think we are doing a pretty good job. I invite any family member to come do what we are doing for just a week and maybe they will understand that this is not an easy task.

[LodgeDodger]

Downtown Lady, thanks for the links. Taking MJ to a cardiologist on Thursday and will discuss.

LD thanks for sharing how you felt insecure as a care taker. I mess up but I try to keep learning. She was forgetting to take her pills but I didn't catch on for a few weeks. I told family and we are decent now at reminders. It seems at every turn that Mom gets worse there is something we aren't doing right. Family can be helpful and also make one feel like shit. Overall I think we are doing a pretty good job. I invite any family member to come do what we are doing for just a week and maybe they will understand that this is not an easy task.

It isn't an easy task, but you're doing the best you can. Forget the family members who cannot [[will not) help out. Don't waste mental energy on folks like that. I did what I could with what I had. While I'm sure Mother would have had expert care at a hospital, she did get loving care at home. Making sure your Mother takes her medicines, is clean, fed, and as comfortable as possible is the most anyone can do for her at this time. A bit of advice--don't let your Mother put the medicine into her mouth--do it for her. She'll miss her mouth, you'll find them under the chair and/or the bed. This is a really bad thing especially if you're trying to keep her medicated and out of pain.

Take everything one day at a time. When things get crazy, just concentrate on the task at hand. Caregivers may not be experts, but they do their best.

[sumas]

MJ refused to go to her Drs appointment. She is trying hard to be a complete shut in. She is alone and crys a lot. I keep bugging her to get an elder attorney through SOC [[services for older citizens) Just today I find out she has been paying for all her tests, hospital stay and dr visits out of pocket. I told her she is covered through Medicare and should only pay the deductibles. This is why she needs an attorney!

Sounds a bit silly but she was feeling so low, I insisted she get out of the house. She is not yet an invalid. I told her she needed a haircut but had to go into histronics to get her to budge. We took her to English Village Beauty and Barber shop. The sweetie pie owner only charges $8 a cut but for MJ as a senior, he charged $5. He did a great job and she felt like a million dollars.

For Eastsiders, I can't recommend this place strongly enough. My husband got the best haircut of his life there. It is new in the area, next to Yorkshire Market on Mack. A mutual friend talked to her this evening and said my husband and I have been designated as demi gods now. Such a little thing we did but it made us happy that she is so happy! We did have to promise her not to devulge the location of this little gem to her girlfriend/neighbor.

[sumas]

Yesterday took Mom for the mold for her radiation treatment. Could have been better, they had an emergency so we waited 1 1/2 hrs for her to get started. Once she went in we walked over to St John's to visit our buddy, PAG. He is not in the greatest of state.

On Monday, when we went to visit him at home, he was so bad I contacted his doctor who said get him to the hospital but don't call 911 or he will go to the wrong hospital. He couldn't really walk so it was an event to get him down all the stairs in the house and outside too.

His prognosis isn't too good. His doctors are fantastic but the hospital care has not been up to St John's usual standards. He has been fighting multiple cancers for many years. They have him stabilized and he most likely will go to a rehab center to help with mobility. His doctors have assured me he will go home. Will definitely work with Hospice at that point.

[sumas]

Just some thoughts. We saved PAG's life by making those moves. PAG is gay, never married, no kids. Two nephews live with him rent free. They do more than he gives them credit for but way less than they should be doing.

We filed legal papers with hospital staff showing we have the right to information and the legal ability to make decisions. It did get faxed to his doctors, yet still we get the question, "Are you family"? I understand the privacy laws but I get real tired proving we have the right to this info. In this case, we are his legal heirs. I understand through other mutual friends that his "family" will challange us in regard to his estate.

Really do not give a crap about things, they can have it all. We just want him as happy and healthy as he can be. It really is simple, we love him.

Even the doctor questioned us. So tedious! Almost feels like, "Alice in Wonderland', Whoooo are you?

Visit him twice daily, worry incessantly about so many, so close to us, slipping away.

Thanks for letting me vent. This is a stressful time for us and just being able to write about some of what is going on really helps!

[sumas]

Good lord, I really sound whiney. Mom is set for radiation treatment. The case/treatment worker's name is Sherry. My Mom keeps saying she doen't need Sherry [[as in the drink) We have have gone around that block a few times.

Now we are now dealing with PAG. His doctor said, HOSPICE. Mister is a non family member. He is gay, his doctor called last night to discuss his prognosis. We will muddle through this. The family circles like vultures.

[gazhekwe]

I hope you will be so impressed with hospice! They are so incredibly supportive and helpful. Medicare takes care of the payments, and they can recommend whatever help he needs to keep him comfortable at home.

It is so hard to go through this even with one person, but you have it in multiples. So far we have been lucky in that our loved ones have gone into this stage one at a time. It is a very intensive time that takes so much of your attention and time. Be sure to take care of YOU, and don't feel guilty about letting things go that don't get you along on your path. {{{{HUGS}}}}

[Thames]

Now we are now dealing with PAG. His doctor said, HOSPICE. Mister is a non family member. He is gay, his doctor called last night to discuss his prognosis. We will muddle through this. The family circles like vultures.

What does that mean?

[sumas]

Thanks Gaz, so far Hospice of Michigan [[formerly hospice of south eastern michigan) has been wonderful. They brought in everything, arranged for his transport home, new meds ...literally everything to ensure his comfort.

The only drawback so far is his primary doctor does not want to deal with him anymore. No big deal since hospice has their own doctors. His primary doctor thought I was his girlfriend and was shocked to find out he is gay so I don't know if he dumped him because he was gay or because we choose a different Hospice group [[St John's) then he recommended. I choose this group based on recomendations from this forum.

His home coming was wonderful. Hospice provided everything to set him up on the main floor of the house. In the hospital he seemed so small and abused. Tests and more tests, he has more bruises than Carter has pills. Coming home he was lord of his life again. We are so glad we helped and were involved in bringing him home.

[sumas]

Now for my personal pity party. PAG was so ill, it was my husband and myself that got him the pain medicine he needed [[not easy), made the decision to hospitalize him, arranged for Hospice and getting him home. Visited him twice every day in the hospital for two weeks. When he got tranferred between hopital floors and stuff got lost [[his bifocal glasses) made an incident report. Kept his close friends advised of changes in health and skunk family too.

Relatives showed once.

Now that he is home and happy for the moment, He is giving credit for all this to skunk relatives. Please...

As always there is more to the story but do not want to be too boring!

A little appreciation would be nice but it isn't happening. I will live with that but do feel terribly sad.

Really need to focus on my Mom's needs now. Way!!!! more important.

[gazhekwe]

Well, there is always some bitter in with the sweet. I always think of the way my father taught me all my life, mostly by example.

We do the things we must to make things better, not for the credit, but just to make things better. If we worry about the credit, we weaken our ability to do good. Celebrate the better ways, and keep on working. Your reward is the joy that is taken in how much better things are.

My dad has his shining moments of wisdom.

[Lferg]

Sumas, try to hang on to the fact you and your husband know the truth. You've been a great friend and gone above and beyond. PAG is lucky to have you both.

[sumas]

Thank you both for reminding me that things should be done for the greater good and not personal gain or credit.

Had a decent nights sleep and a nap today to boot. Things seem more positive now.

Other than cooking dinner, I plan on doing nothing today. Mom wanted to visit a friend who is ill too but my husband stepped up and drove her. She isn't supposed to drive and doesn't even realize she has no keys to the car.

Thanks to all who recommended Hospice. They really have given me peace of mind.

[sumas]

Just a short update, took Mom to Ash Wednesday services & light lunch and came home prior to her radiation treatment. My husband went upstairs to the bathroom but she was convinced he went to bed. We take turns taking her and I never could have guessed the strain of her illness would take on us.

Hope this treatment works but she is getting wierder by the day. She is very religious but even the minister calls us for church service info now. Everything gets strange. I am back now to relaxation exercises to calm my mind. What's the old song

[sumas]

Ok, kind of remember the song, goes something like this.

Don't let us get sick, don't let us get old, don't let us get stupid alright. Make us be brave, make us play nice, just let us be together tonight.

Paraphrase , sorry about that.

Really shocked at myself on how stressed I have been. So many people we know need special care. Don't mind the special needs, it's that real caring that hurts.

Just do not want to lose family and friends. I know life is a journey, but letting go is so hard for us that remain.

[sumas]

I do not mean to turn this into a blog. I just really need to vent. I am so heartbroken I have to express my feelings. Mister has maybe a few weeks left to live. Another kind friend is arranging to have one of the Caputian Monks to pay a house call. I will just feel better if he gets absolution. No folks, I am not Catholic, but maybe he is. He was raised by priests and nuns at a childrens center in Detroit. He always said they saved his life.

Strangley, I own a relicary, so will do this if I must.

Here is how my days are going, my husband is spending the night with his mom. Her dentures keep falling apart so he is taking her to her dentist in the morning. My mother has her radiation treatment everyday for a brain tumor. I promised mister to visit and make him of all things tuna salad. MJ with a heart problem wants a visit too.

Just so darned depressed! Even my dog is ailing. He is old too.

It is just so hard, to have so many dieing around me!

Mister wants his nephew to have his van. It needs some work. He gave us $500 dollars to take to repair shop as a deposit. Even there I got Whoooo are you? So sick of that question!!! We are best friends that he trusts. Nephew is too damn lazy to take it in.

Sorry to vent but needed to get this out of my system!

[gazhekwe]

There must be a reason for all these peple needing you at this time. You could be the strongest person in their lives. It would be good to pace yourself, you cannot give all to every one of them, you must keep reserves for your own needs as well. Strong vibes for you >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

[sumas]

Thanks Gaz. Yes, I am a very strong person and have the ability to make good moves. I just really feel so drained at the moment. Of course, I have other factors in my life too that complicate things.

Things will improve, I know that! Mister called and said do not visit. I am not sure what that means. I told him we would probably come but I would call first. When people are that ill, social visits can be taxing. I just love him so much. I wish I could spend more time just holding his hand.

Not sure where the quote comes from, "It is better to have loved and lost, than never to have loved at all."

[detroitbred]

Sumas, I lost my mother to a brain tumor when I was 16. She was 39. It was very sudden and unexpected, she had not been sick or had any symptoms that we know of, just here one day, and within 2 weeks, gone, not surviving the surgery to remove the tumor. I can't imagine going through everything that you are. I don't think my family could have lived through it. We tried to be comforted by the fact that my mother didn't suffer, since the doc's said that my mother would have only had 6 mos if she had survived the surgery. Not really much comfort though. Very hard to understand why someone is taken so young. Try not to let the lack of appreciation for what you do for others get you down. Your rewards will come later. Don't expect anything from the family and other friends of the ones you help...then you won't be disappointed. Appreciation is not the reason that you do what you do. I know you are making the best of the time you have left with your mother...you will have many more years and memories than I had with my mother, so cherish those once she is gone, and remember to take care of yourself too, physically, emotionally and spiritually. God grant me the serenity to change the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

[detroitbred]

Sorry, you probably realize it goes like this: God grant me the serenity to accept the things I cannot change