Here it is March 1..my brother is 65..yikes..that makes him a seasoned citizen and I am not too far behind...I am not ready for seasoned citizenship so I think I won't think about that!
Hope we have a better month....spring is on the way!
Got a sick DH this afternoon; very dry cough, cough, cough - nothing coming up. Nausea, diarreah (never could spell that); doctor said to bring him in - but can't get him there; so he will call in RX for me to go pick up. And here I thought March would be better than February! Go figure. At least the sun is shining.
Thinking about placement for my DH. Researching, visiting and checking resources in our area. In-home aide (from agency and not from agency) situation is not working out well. Considering live-in aide. It has been a really tough winter season for us. I am so looking forward to spring.
Hello to everyone in the third month of this year 2011. In Louisiana it is mostly warm but some of the nights are still giving us some winter feelings. It is nice. The weather is nice, the new life of the plants and trees are beautiful, and we all keep going. My dh is still hanging in, and wandering from home. He is keeping us on our toes. Never a dull day. Hoping all of you have a great month and remember to take care of yourselves.....until next month,,,,, praying for peace for all of us.
The birds are singing this morning and it sounds so good. Funny, the little things you miss. School here added a half hour to the school day, for all the snow days missed.So now all morning long my DD is fussing about how loooong school is. I feel so sorry for the teachers, I don't know how they do it.
On Monday we got another 2-4 inches of wet snow, followed by rain, followed by freezing. We now have ice everywhere on top of the piles of snow. This year the coast of Maine has received the most snow.
DH is a little better this morning, but still has it - whatever it is. I did manage to go to the grocery store BY MYSELF! Felt so good to just wander the aisles alone! Doesn't take much to make me feel happy these days!
Sun is shining, things are starting to bloom - so maybe spring is coming!!!
Am looking forward to Spring and the beautiful weather - not here yet- but am not looking for the inevitable change in DH's cognition. He always takes a big drop when the season's change and with the smaller changes he had this winter a big change is not what I can handle.
cloudy and drizzles out here in the left coast of the usa..chilly too...cat has been medicated with all but one pill yet..hubby too this morning. I still have the afternoon pills to get in em..nothing like a cardiac hubby and a cardiac kitty...
Got the silver to polish today. That should keep me out of trouble for a day or so.
Contractor was supposed to start our new house this week, but it is still too cold and miserable.Can't wait for longer daylight. Does sundowning improve with longer days?Had a senseless,tragic murder in our extended family last week which makes me ponder how safe are we really in our homes.Seems older people are being terrorized more often in our area.Spring can't come soon enough to suit me.
This month is when my DH has his dr. appointment at the VA clinic and there will be a lot to discuss seeing how they only make appointments for him once a year. I hope that something can be done for his Parkinson's. I am thinking that he will be advanced enough for the doctor to be able to tell me what stage he is in. I have just been guessing but then again it really doesn't matter that much because he is in what ever stage whether I know what it is or not.
A hard day today. I went to the grocery store, came home to find DH in the garage. I asked what he was looking for. He said , just looking. The same thing happened on Tuesday. As I was putting groceries away, I said your coat is in the car. He had left it there yesterday. He looked at me. I said get it from the car. After he brought it in,he said, what do you want me to do it with it. I said, put in in the closet. He said, where is the closet? Since he was standing in front of the closet, I showed him. Living with dementia is hard.
Maryd this brings back memories. DH would leave car or truck door open when he was able to drive. Yes when he would drive out of garage or drive truck out of barn, door open. He would walk out of kitchen or bathroom leaving water on. Dementia is mean.
On this wet snowy night where I have my leg up bleeding from falling carrying the dinner stuff back up to the kitchen (she didn't come to see what happened - but, then she can't); anyways, I'm reminded of what my uncle in Dearborn, Michigan used to say. "The lord helps those who help themselves." He would always say that as he reached for more food at the huge family dinners. He used to be the sherrif of Wayne county around the roaring twenties and loved telling my father he was sitting with the enemy (Canadians ran rum across the great lakes).
He had ten acres out back and farmed them. We would pick corn and take it right to the pot and then berries the next morning for the waffles. That's where the three Gunn sisters kissed me behind the small barn. He took me to the Ford museum where I got to see the model T car.
I was asked today by another poster here if looking back and knowing what I know now would I have missed all the good years to trade these tough ones. I've thought about that after answering 'no'. That's right - it's no - I would not trade. So I'm sitting here looking out into the night walking through memory lane. It feels really good. If I could just get my leg to stop throbbing.
Bless you Wolf. I don't think I would trade either, sometimes a few regrets cross my mind but I appreciate and cherish the time I have left with DH. I'm not saying it is easy but I guess trying to say I'm trying make the best of it! You must be in upper states or Canada? It is cool rainy and in 60's in Mississippi.
For those of us who have had good marriages, we really don't have to wonder too much if we would make the same decision again if we knew then what we know now.. Had we chosen someone else our problems could be so much worse..illness comes in various forms from this AD to cancer to chronic things... But we could have selected someone abusive,a cheater, a poor father and partner and for those of us who have had a great mate..this is just the hard part of the vows we took.
71 yrs young Saturday; 50 yrs married in June. Would I do it again? Nope, but not because of the present but because of the years before this road (vascular dementia) began its creeping invasion 25 yrs ago.
Have just had a weekend visit from our 3 kids. They all came to Maine (from New Mexico, Illinois, and Massachusetts) just for the weekend to meet with a caregiver navigator to discuss how to take care of my wife if I can't due to heart attack, auto accident, etc. I don't think my wife knew who they were, but she seemed to enjoy having more people around. For some reason, over the past week or so she has started going to the bathroom by herself and voiding, or even having a BM. This after almost 2 years of incontinence. Has anyone else had this experience. It makes me think she is starting to get better, but I know that is not possible.
So, another 30 inches of snow today......so far..and it is still coming down. Oh well, it will melt.......sometime! Just been stuck in the house for 2 days now...I don't dare take husband outside at all---not that we could get out of the driveway anyway!
Marsh, I have learned to count my blessings! Remember this is a roller coaster illness, and she may stay better for a while and then crash to be further along than she was before she improved. Just enjoy the break! <grin>
I'm glad the children all got to come. When is your surgery?
Ann, have you considered moving to Florida later on? <grin> That is just too much snow for me!!!
Zibby, I'm sorry you had it rough.
Mimi, you are right. My husband and I had a great marriage until AD, and this August would be our 50th anniversary...I don't know if he'll make it...but I must say, after hearing so many of the histories of others, my husband has been a very good patient.
I'm ready for winter to leave and spring to arrive!!!!!
Well, the Hospice nurse called. They are not going to be able to get my husband out of the bed any longer. The CNAs will bathe him in the bed. And for respite, they are picking him up in an ambulance to transport him.
His muscles just can't listen to his brain any more. The connection is broken. It has been a difficult two weeks, as you have noticed from my posts these last days.
I'm adjusting to his loss of muscles and inability for us to get him up any more. He could continue like this for a long time yet.
That happened to my mom..she could no longer help them help her. It was a rare event when they did get her into a wheel chair so the bed could be changed out from the one she had to one with an air mattress. She never went to the hospital after that, was at home until the end.
It is very sad when this happens. At this time, too, we could only get some liquid into my mom with a special syringe..we were lucky to get 500 cc in her a day. Her look was often like the deer in the headlights or just vacant...she waved her arms around which I thought was in response to the ceiling fan..in retrospect I think she was reaching out to her family who had gone before..she spoke German if she spoke at all. I hate to think of this as I know this is what I will face too with my DH unless one of his other health issues grabs him first.
HUGS TO YOU and stay close..we are here and you will need to vent, just talk, cry or have us near and we will all be here for you...none of us walk this journey alone thanks to Joan..Dear Joan..what would we do without you and your site..No wonder it is the best of them all.
Mary i am so very sorry for so much loss lately. i know you are strong and will survive whatever is thrown your way. sending hugs-- happy birthday Zibby@ divvi
Oh Mary, I know what you are dealing with. My husband was "in bed" for five years. It is just another hurdle to get past......I just wish you didn't have to.....
You have done all the right things, Mary. And, most of all, you have continued to live your life as best you can....even with all you have had to deal with.
Mary, I know this must be difficult to talk about, but could you please explain a bit more for me? I am curious if the use of a lift has been suggested, or if it is the normal course to bathe them in bed when they can no longer stand at all. Sandi, maybe you know? I am asking because I am thinking of bringing Lynn home....... He can not stand at all. He can't even shift his weight any more. He has a special air mattress called a turn select that gently moves him throughout the day to avoid bedsores.
They do use a swing lift (vanderlift) to get him out of bed daily and into his special lounge type chair. And they use the lift to bathe him. If I brought him home, what does an in bed bath require? I can not afford to hire help. But Sandi, didn't you say you did your husbands care alone? So much to think about..... He is comfortable, content and happy there. I KNOW his needs are being met and his nurses are fantastic! I worry about the medicine he is on for the pulmonary embolisms, his special diet due to swallowing issues, and it is such a relief to know qualified personnel is with him 24/7.... but, God how I miss him and want him home!! So selfish, yet I can't stop thinking on it.....
Nikki, as you know, the lifts are bulky and take up a lot of space in a room. They are almost a two person job...or at least I always thought so.
After I brought my husband home I had two aides that I met at his facility come and get him up and in a wheelchair and then they would transfer him to a bathchair (with a back) and showered him. It took both of them to do this. They came twice a week. The rest of the time I bathed him in bed. I even got to the point that I could change the entire bed while he was still in it. I also had an alternating air pressure mattress for him. He did not get a pressure sore until two weeks before he died. He was not eating or drinking and the body just started breaking down. Hospice and I treated it the best we could but knew at that point we were fighting a losing battle.
Nikki, I know you want Lynn home....you miss him....but please think about what this stress and strain might do to your own health. I am older than you but with no awful health issues.....I had already emotionally separated myself from the husband/wife dynamic. You are still so emotionally invested in all of this.....you have serious health issues of your own. I would worry about you. As you say, he is happy and content....you can visit and baby him, hug and kiss him, give him treats and then go home and recharge for the next visit.
Nikki, I agree with Sandi*....the reason my husband is still at home is because of financial reasons. I have Hospice that comes and bathes him daily, and I pay a caregiver to get him in his recliner in the morning and back into bed before I get home in the evening. The weekends are the times when I have the washing, feeding and cleaning duties. Everyone I have spoken to about the lift says that it takes two people. I have not considered it. Divvi has a system that works for her to turn, clean and change her husband without a lift, but she's been doing it for a long time. Also we have gel mattresses on top of the regular mattresses.
Your health is such that you don't need the physical and emotional stress of 24/7. Just enjoy your time with him there each day. He still can hold a drink (mine can't) and he can talk to you (mine can't) and you are able to spend quality time with him without the stress that was breaking your body down. He would NOT want you to bring him back home.
I love you and I'm telling you that you are where you and Lynn need to be....I remember what you went through before you placed him. Please think about this carefully, dear one.
Nikki, Think very very carefully about what you are thinking of doing. A Hoyer Lift for my dad took a lot of room in his large bedroom. And it is was a two person project. We had to have caregivers. Also, if Lynn cannot move himself at all, it may take two people to move him just in bed.
I would go down to TX to visit and help at different times of the year. More often than not some of those caregivers would just not show up..we even had some private hires. And at that, it took at least 2 so there could be time off for them. My mom was already gone and my dad was alone. When the caregivers failed to show up I had to do it myself and it is more work than you can imagine. While there are many things you won't have to be concerned with there are other things that will be of major concern..how will you manage at night? What if there is a emergency for Lynn and you are asleep? What kind of additional support will you have? Will you have Hospice to help, church friends to help, who will be with him when you have to go shopping for groceries or go to the doctor yourself?
Perhaps you could organize an opportunity for YOU to be the caregiver for Lynn while he is in the NH. You be the one to do the baths, move him, etc, have the staff train you and then have them step aside and let you try your hand at this before you move him home and see how that goes. You might find it is more than you can manage. I know you want to have him home,Lord knows we all would wish that for our LO. At the same time you mention your beloved Lynn is happy where he is and he is safe. There are more hands to help him there than would be present at home. What happens if you become ill? You have mentioned you have had your own injuries. How will you manage the hard lifting, moving etc. I guess I am saying that you have to consider how much of this is really clear thinking as opposed to emotion. I too worry about this situation arriving. But I honestly think, for myself, if my DH becomes like my mother did I would have to consider what is best for him and his care along with what I could manage to do for him alone.I think if the NH were to tell me my DH were near death I would consider bringing him home but with so much care needed otherwise I am not sure I could do it.
I hope I have not offended you. I don't mean to do that but I am concerned that a great deal of emotion may be driving your decision. You have to consider your health and support system for an at home situation before making this crucial decision.
Nikki, Go to the thread where the question is asked " How do I roll over my LO".. It might give you some insight into what you may be tasked to do if you bring Lynn home.
I tend to agree with those who recommend you enjoy your time with him in the contentment you describe so lovingly and leave the really hard work to the staff. I know I wish I had more time just to enjoy my DH but I have all the other chores to do and he is still doing pretty well and can be left alone for a time. Most of us are so worn out from the day to day issues of keeping appointments for our LO, to all the matters of the house hold etc that we run out of steam.
It is not always greener.....let your head rule your heart..
Dreary, rainy day here - and that's always bad for DH. Need sunshine! Went to my caregivers luncheon today (I can leave him for an hour or so). Got home earlier than usual and he asked me if I enjoyed working in the yard today! He was holding the TV remote and the telephone. He said he had been trying to call me but couldn't get an answer. He was trying to dial on the remote! First time this has happened. So now the TV is messed up! Oh happy day! He's going to get scrambled eggs and waffles for supper!
That sounds like something I might want to fix for my DH sometime. I get so tired of cooking and trying to think of different things to fix. Tonight DH had chicken soup and ham and cheese sandwiches. I have not being feeling great today. It started with my stomach hurting, then hot and sweaty, then nauseous and then light headed, so I parked myself in my recliner and stayed there until I got the ambition to fix the soup etc. I don't feel like eating so far!
Jean 21, be careful - that's how mine started with the 'bug' that is going around here. Took me almost two weeks to get rid of it totally! I fix eggs and waffles at least once a week - I love them, and DH will eat anything I put in front of him! But I get so tired too of trying to think of what to cook! When I win the lottery, I'm hiring a cook, a maid, a hairdresser and as many aides as DH needs!
Ladies, ladies! (and Gentlemen!) The time has come for all good caregivers to buy Marie Callender's TV Dinners! That way the patients get a meat and two veggies!!! Salsbury Steak, Pot Roast, Beef Tips, etc. - the meat is soft to chew and you don't have to cook! I have the caregiver feed one to my husband for lunch each day - that way they don't mess up my kitchen and my husband loves them. DO NOT FEEL GUILTY! These are amazingly good! There are a couple of good chicken ones too!
Also I'm using more canned veggies and instant mashed potatoes; or baked potatoes, or baked sweet potatoes..All quick and easy and NO WORK FOR ME! <grin>
You see, finger food doesn't work any more and we need softer foods. And I'm not cooking a big meal after coming home from work....scrambled eggs does work about once a week! <grin>
I had a bug a couple of weeks ago. It feels good to feel good again! Now if the cold weather would go away and let Spring come early!
Thank you Mary, Sandi and Mimi for telling me what you feel is best for me instead of what you thought I wanted to hear. I appreciate it muchly. ♥ Ahhh Sandi you are so right, I am still very much emotionaly invested. He is so loving and he is still able to express his love, my heart is wide open. I have always continued to help with Lynn's care. The aides joke that I should get paid because I am always helping. It makes me feel useful, and I truly enjoy taking care of him now.
The reasons I had to place him have changed. He is not agressive, combative or abusive now. He is a gentle lamb lost in his own little world. My disabilities are not life threatening, just very painful. I do have limitations due to the brain/neck surgeries I had, I can't lift more than 40 pounds. And I have nerve damage in my neck and shoulders from the surgeries as well. I can't lift him, and I do have a lot of trouble rolling him. I just can't do it without too much pressure on my head. But I keep practicing :) For today, he is staying where he is...but I do want him home and I will keep working and trying to figure out a way to see if I can. Mary, I had to chuckle because you are right.. Lynn would kick me square in the butt if he knew what I was thinking. He would want to stay there, in my heart I know this. So much to think about.... for now I will just continue to enjoy our time together and be grateful for each glimmer of "my Lynn" I am given ♥
I just wanted to chime in on the meals, do any of you get the meals on wheels? It was a Godsend to me when I had Lynn home. Every little bit helps! And Mary, I agree! I often heat myself up one of these types of meals for dinner. They are tasty and easy, all for that! :)
i also use marie callenders meals for aides to feed DH when i am out. they seem to be more like homeade than others and a variety of choices.
nikki, i can understand completely your wanting to bring your Lynn home now hes manageable and compliant. while i agree the needs to be placed have changed he is now also needing more round the clock type care and handson and strenuous care-needs. i personallly wouldnt be against your bringing him home but ONLY IF you had daily aides to help you with his care needs to do all the grunt work. nikki you said it in your own posts, you cant turn or strain yourself at all. you have no idea how much straining and lifting will be needed. even those who can halfway manage to get them sitting is still so much effort on the caregivers part. even with my socalled tried and true practices i still tend to get back or shoulder pains at times not knowing i had strained myself. i know you want to be able to spend the last time with him at home but only if you can get inhome help would it be practical and feasible. otherwise i think like the others you are letting your heart control your mind. hes happy, content, ADJUSTED and if it doesnt work out at home, he would come out the loser. we must put them 'first' and their needs. we both agree on this. hugs, have things in place if you are really considering this . divvi
Yes dear Divvi it is my heart doing all this thinking. I will also admit that it is very selfish on my part. I should clarify that I CAN lift more, but I shouldn't...and yes, I know I am being stubborn <big grin> I have been trying to do his care at the nursing home so I do know at this point I am not able to do it. He only weighs 120ish but Lord that is heavy when it is dead weight. I am also very much afraid of hurting him, he bruises so easy now on the coumadin eeeeep. I am still in the "just thinking" stage.. but yes I would have all of my ducks in a row, with a few to spare lol
Due to several issues with his other doctor, including me having to fight for the xrays when Lynn had pneumonia I have been valiantly fighting to get Lynn a new doctor. Finally yesterday I met with him. He is a wonderful man! He GETS Alzheimer's. He is retired, but I like that! I think it gives him more insight into end of life issues. He is compassionate and was wonderful with Lynn! He was able to witness how Lynn IS able to interact with me... he was super loving yesterday ♥ I even got hugs while trying to help turn him so the doctor could do his exam. He was rubbing my back and patting it awwwwww!! he also saw him pucker up for many kisses and he heard him say I love you sweetie...awwwwww.... The doctor said he was witnessing a miracle and that he would help me give Lynn the quality of care and life that he deserves. WOW, I am so grateful and relieved. Finally someone who understands!!
He also kindly told me now was not the right time to bring him home. He is on some pretty strong meds for the pulmonary embolisms. The doctor does feel with the PT and range of motion exercises I do on him daily that within the next 6 months he might be able to come off some or all of those medications! He said then he would sit down and talk with me again about if I can/should bring him home. Compassion, I didn't know how badly I was in need of that. Did I mention I really like this doctor? :D
Yesterday I was supposed to take DH for a haircut. When I went in to wake him up he told me he had gotten up through the night to go to the bathroom and had fallen! He hadn't turned on a light so that could have been the problem but he fell in the bedroom which has carpet and he wasn't bruised but he didn't want to go to the barber's so we went today. After his haircut we went for breakfast and then the grocery store (of course). In the store DH was walking behind me, which he has started doing quite a lot lately, after a while he said he liked following me around and I told him that was how he caught me! He laughed.
For some reason he has asked several times this week if it is a holiday. I don't know why he keeps thinking it's a holiday, he isn't getting a day off anyway. lol.
Jean21, if we win that lottery, the barber will come to you!! My DH also walks behind me - and so slow! Hopefully, he will watch the basketball tournament today, then KY plays tomorrow - then we'll see from there. He really likes to watch the ball games now - not much before.