I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Sorry, but the "tackle one thing at a time" didn't work this time, and it all became too much for me.
Luckily, I have "troops" to call on or I would be in the ER right about now.
What if you were in my situation - do you have someone you could call?
Nope, no one near me. All 2 of them are 1,000 to 3,000 miles away. Not a happy thought.
Joan, I'm so very sorry and can certainly understand the meltdown. Happy to hear your sister is helping though. Hope and pray things calm down for you before you totally melt-down!
Joan I don't now how you/we do it. I really don't. It is not right to feel like we will almost die of stress. Your week has been unbelievable, mine seems almost pale in comparison.
I have someone in Canada, one of my surviving sisters to call and vent, but of course she cannot help otherwise.
It is damn scary, when you feel like you are going to explode or have a heart attack.
and ditto on the eating thing. I do the same. (joan)
Oh, Joan, I am so sorry. I feel so bad for you and Sid. I can't even imagine how difficult it must be to have your brain going darker by the day and still understand, at some level, that this is happening. And, you, the caregiver, sinking in the quick sand, almost feels like you can't breathe sometimes. The week you just barely lived through defies imagination, they use incidents like these for story lines in fictional books, don't they? Can you at least get Hospice to come in and help with Sid while you work on some of these other fires? I feel both of your pain as you both contemplate Sid's move to a facility. I think it must be so much more difficult when your lo understands that he is being moved to a place where you will not be - the unknown, although much of his world is this way now, very heart wrenching. My thoughts and prayers are so with you, my friend. So glad you are going away for Thanksgiving, so glad!
Dang girl, your plate filled up fast! One step forward with a plan, and twelve steps back with way too many cards in your hand. My heart goes out to you, and really pray that Thanksgiving is still on. Yet it must seem so far away yet. So sweet of your sister to step in, after you called, and offer to do what she is doing. Kinda wonder what nursing homes in Chicago would be like for your father?? Guess I just think you are taking on too much, and want a little less pressure for you. So sorry for this avalanche, and hope you find a way to pace yourself, and get better yourself. My thoughts and prayers are with you. Hugs, and more.
joan sorry to hear you are having so many issues of late to tackle. they all seem crucial but just take one at a time, and take your time. things always look worse under alot of stress. like everyone else it does appear your breaking point is near and that placement should be a priority for both your dears. i know its not what we want to hear but survival comes first. divvi
Lucky we live is "virtual" world and your sister is willing and capable of helping you cope with all that's been dumped on your plate. Hopefully this too shall pass and some semblance of sanity will return soon When all else fails ..... Who could take any more?? If you blink your eyes really fast, it looks like there are strobe lights in the room. I have been having random parties throughout the day!
I'm with Janny - a Chicago nursing home near your sister was the first thing I thought of when reading your blog. Is that a possibility for your father? I guess it would be cold, but that's what coats and blankets are for - right? It just seems you have had too much burden on your shoulders for too long...
I totally concur with a NH near your sister for your father. My father passed last March from dementia and now I am dealing with my mother who lives 75 miles away plus my husband with Alz. I decided a long time ago that I am getting help for my 90 year old mother through friends and church acquaintances where she lives. I decided I could not handle my husband and my mother. For whatever reason my sister does not seem to be picking up the ball and I am done fighting that battle. I wish she would do more but she does not so that is the way it is. My heart does go out to you. Really it does. Whenever things become overwhelming I tell myself, this too shall pass.
Thank you everyone - I'm hanging on with a lot of help from everyone - my sister, our step-brother, and our sister-in-law are all on my father's situation. When they straighten out the money and the nursing home situation, they will tell me, and I will get him moved.
A nursing home in Chicago is not an option because the move alone would kill him, and as it is, he has to be shipped back to RI for his funeral. He is with me because when my stepmother died 2 years ago, my stepbrother and sister-in-law wanted to keep him in RI, but they had handled EVERYTHING by themselves for 4 years (after I moved to Florida). And I do mean EVERYTHING, which included moving the folks to the first assisted living, handling all the finances, running errands, taking away the parents' car keys, dealing with my stepmother's stroke, schleping my father to the hospital every day to see her, my stepmother's 6 months of Hell from hospital to rehab to nursing home, moving my father to the nursing home to be with her. Not to mention my step brother's cancer surgery and my sister-in-law's father's death, all going on at the same time. My sister-in-law was like I am now - melted down and hysterical. My sister and I made an emergency trip to RI for a long weekend to help pack up my father's stuff, and do whatever errands we could to ease her burden, which at that point, included taking care of my stepbrother, who had just gotten out of the hospital from his surgery. There was no way I was going to leave my father with them after all they had been through. And since the ALF was right next door to me, and I knew all the ins and outs of caregiving, it seemed stupid to move my father to Chicago to my sister, who works full time. So he is here, and here he will stay until he dies, and we fly him back to RI to be buried. At least I now know I don't have to do anything related to the money, the paperwork, the inquiries. The 3 of them will handle all of that for me. I am thankful beyond words to have them.
This morning, my friend showed up at my door with a bouquet of flowers and blueberry muffins to make me feel better. How great is that?
Even Sid is aware of how stressed I am and is not complaining about getting out of his chair to warm up his meals or get himself a drink. He keeps saying he wants to help me as much as he can. Amazing, isn't it? It's so hard for him to walk and to move, but he's doing it. Yet he hasn't noticed the flowers that are prominently displayed on a table in the living room.
Joan - It was only a matter of time - like for all of us (plus your Father). Good grief, how have you lasted this long? Thank goodness someone is taking on the paperwork & phone calls, that's a full time job in itself. I am sending you cyberstrength--wish I could do more. But, yeah, sometimes it all just piles on at once. Take care. Betty
So glad you are getting some assistance in the planning for your father, and so glad you made that call to your sister. You are under an overwhelming situation. We could all take a lesson from what you have shared. Please know my thoughts are with you, along with so much respect.... Have a couple muffins, you need to take care.
Joan, you are amazing with how much you have had to do...way too much on your plate for far too long. Time for some help with your father...he will be fine, once he's settled in. Take care.
I hear you loud and clear, Joan...you could be living my life too... My Dr put me on Lexapro...took 2 tabs and had to be pulled off because the side effects were so so bad...today I feel ok but my peer counselor came by and I was is such a bad state that it has really been driven home that I need help now..today I feel I can manage but I know the stresses have caused me the migraines. And it drove home just what you mentioned in your blog about how impossible it is when the caregiver goes down...I felt so alone yesterday realizing that there has not been anyone to take care of me for the last7 years... And of course DH can't begin to fathom how it is he is the cause...and actually in the greater scheme of things, he is pretty easy. It is just everything that surrounds taking care of him, the house etc etc etc and no help from him..he will say "can I help" and when I ask " can you help me start the grill" he will say no. So much for help. I don't know how you manage to juggle all the balls you do!
Oh Mimi I hope the help you need comes through real soon, I know what you are saying, yet I am lucky so far no health issues. (Just a warped mind...)
Joan really said it right, IT IS TOO MUCH FOR ONE PERSON< how the hell can we do this.? dang, where is that village we are all supposed to live in? Can you imagine what it would be like, to have us all around to help each other out, and not only WOULD WE, we are trained professionals and full of love.
I am going to pray and ask and hope this for all of us, that help comes through.
At least we here all know what the others are going through or will be going through as we all live this nightmare daily. It is a tremendous help to me to be able to come here and learn and listen and vent. I really don't know how many of us survive this monstrous disease or have anything left to move on when it's all over for our lo.
We have to make so many heart-wrenching decisions, all ALONE, as our partners are no longer a partner. We have become mothers, trapped and strapped to our declining spouse. When I try to talk to my once very intelligent, dynamic, intelligent husband and realize that he can't keep a thought for more than a few seconds, I feel so heartbroken. I'd really love to be able to run away somewhere and forget this whole life drama forever; but, of course, we all know that we cannot. Just when I think all the tears have been shed, I watch this decline and realize that his poor brain is melting down before my very eyes, and then my eyes fill with more tears (guess that's really a good sign). I cannot believe that he is no longer aware of his own intellectual decline. I feel so bad for him.
I do look forward to the day when I can move him somewhere else and I can begin to enjoy MY life once again. At the same time, I dread the "empty house" that I will face. I think he would do well in an Adult Family Home and that is the direction I will lean towards.
God help us all and keep us for another day, another life.
Joan, you have had a year that has just been one horribly stressful event after another. I was smiling to myself when you wrote that you had decided to just deal with one problem at a time. What overly optimistic thinking THAT was!! You had to know that unanticipated problems were gonna mess up that strategy! So, please ... take some deep breaths, prioritize what steps you must take immediately to solve the most pressing issues that are eating up your time and energy, causing you to stress yourself out to the breaking point. Then do what needs doing, continue to ask for help from others for help, and then decide to take a walk or hit that ice cream! You have been teaching all of us for several years how we need to hold it together to deal with our worlds when they begin to explode on us ... and when we feel we simply cannot handle one more thing on our plates. Now it is time for you to make those decisions which may be quite difficult ... but necessary in order for you to survive. We can't lose you, Joan ... so you must hang in there for yourself and your world, and for us and our worlds!!
How my heart aches for all of you that are so weary from this burden. Compared to many here I had it easy. I recall wanting the burden to go away and the problems to be over. When it is over, you will need the rest and it takes more than days, weeks and I think even months to know what normal is because it has been such a long journey we forget what normal was like. Good days and bad days here. Today is a bad day, but tomorrow will be better. Love you all and think about you so often. Keep the faith.... remember.....When you think you are drowning in life...don't worry....Your Life Guard is walking on water!!
I am glad your family is helping out with your Dad Joan. Caregiving for a spouse is more than enough for anyone. How wonderful your friend brought you flowers and blueberry muffins! It is rare to have friends "who get it". I am sorry to read of Sid's decline, my heart aches for you Joan. ((hugs))
Thank you for asking. You cannot imagine the difference made in my stress when Arlene (my sister) took over the nursing home search. She has done all the phone calling and inquiries, and when she is done, she'll just tell me which ones to go visit. My stepbrother, who handles my father's money anyway, filled out and faxed the financial form to the lawyer's office within one day of being asked, and he and I conferenced called with the lawyer Friday morning. Even Sid is helping. My meltdown was obvious to even him ( It wasn't a quiet meltdown), and he has been getting up without whining, instead of expecting me to wait on him constantly. He keeps saying he doesn't want to be a burden. I know it hurts him to move, but I cannot wait on him 24/7 without a break.
There are still lots of paperwork, doctor apts., and issues related to Sid's needs that must be addressed and handled, but it's so much easier to deal with when I don't have all my father's stuff on top of it. I am so thankful to have a good family.
And of course, there's always a little humor. Marc and I were on a conference call with my lawyer, as I mentioned - she was explaining a Qualified Income Trust and what we had to do to apply for Medicaid once my father's money ran out. When she finished, there was absolute dead silence on the line. I wish we had Skyped, but I knew without seeing his face that Marc and I had the same "deer in the headlights" look on our faces. Neither one of us had a clue what she had said. He finally broke the silence and said he had no idea what she had said. One hour and a $200 lawyer bill later, we both understood what we had to do. I might add that the one hour phone call is usually $400, but because both my father and I are clients of her firm, and she did all of our legal paperwork, we got a half price rate. How nice.
So yes, I am dong better. I had a coupon for a pedicure, so I went and got pampered today. Finally got the summer purple off of my toenails, replaced by an autumn brown with sparkles.
So nice to hear the humor come back. It is so great to have people you trust come along side and pick you up and take over, isn't it? I have always been the one who took care of others and gave to others, etc., the strong one, never needed help and felt very odd to have to accept it on occasion. My little visit to the hospital and close encounter with death changed all that. I really couldn't do a single thing for myself so I had to let others take care of me. I got kind of used to it. It frees us up to heal and get over stress and somehow move on eventually. Praise the Lord that you have the support of a good family. So many of our people don't have that and I feel so bad for them.
So, how's the placement of Sid coming along? Does he know that he will be leaving you yet? I can't remember if you told us if you actually have a place for him or not?? It is interesting that he was able to understand and continue to understand that you had reached the end of your rope and he needed to help himself more. My husband totally forgets about my illness and he can't hold information when I tell him for more than a few minutes, if that. I can almost feel the stress leave your body, even though I know you will suffer from the transition as all the others have who have placed their lo. As the saying goes, time heals..... You'll be in my thoughts and prayers, Joan.
Joan--Here's an unconventional thought--could you consider placing Sid and your Dad at the same time? Could they be roommates? Could you tell Sid that he's going to look after your Dad for a while? It could be a trial respite for Sid to give you some time to decompress. I'm concerned that the amount of stress you are under has to be doing some damage to your health. Before you say no on this idea, think it over.
In a perfect world, yes, it would be ideal for Sid and my father to be roommates. We had thought of that. But it's 2 entirely different issues. Everything comes down to money. My father will be accepted into any nursing home that has a bed because he is initially going in as private pay. Medicaid will take over when his money runs out.
Sid's situation is entirely different. It's a Medicaid issue, and to be honest, I'm too tired to write all the details. He's not leaving home anytime soon, except for respite when I go away in November.
It's just such a relief to me to have my sister and stepbrother handling my father's situation. There was no way I was going to be able to do it.
Oh Joan, I am so sorry. In June I ended up in the emergency room because everything just came crashing down at once. (They were no help by the way, just 8 hours wasted and a $1500 bill... which only added to my stress...) That was when I made the decision I needed to put my DH in a nursing home asap and wonder of wonders, one of the places where he was on a waiting list called me a couple of days later and they had a room available.
Bless your sister and stepbrother...and take care of yourself. Thinking of you!! Shannon