Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

  1.  
    My husband is 55 - was diagnosed at 53 - showed signs at 51 - he has absolutely nothing physically wrong with him - he bike rides walks cuts the grass (very little motivation I have to push him to do these things) etc. but I cannot have a conversation with him he never knows the day he can't find his socks and is by my side every second that I am home - he is completely dependent on me -there are times I want to run away - I have to go to work - pay the bills and be a happy wife - if I am not happy and want time alone he gets so mad at me - I am 50 - 20 more years - I can' t imagine

    Thanks for listening
    • CommentAuthorZibby*
    • CommentTimeJun 1st 2010
     
    It does get wearisome--probably for hb, too. I've done my 20; so don't have that many ahead--he's 72; I'm 70.
  2.  
    katie-good to hear from you again-even with unhappy thoughts
  3.  
    I know Katie. I completely understand. I'm 48, husband is 62. I think I've spent the last 5 years making a sort of peace--as much as I can achieve anyway--with life as a lonely person who takes care of someone else. I have good stuff going on--young adult kids, many interests, family nearby--so I can't paint it entirely negatively, but the task (taking care of the guy for an unknown quantity of years,) and the loneliness (as a person ineligible for relationships) is just something I'm having to learn to reconcile myself with.
    • CommentAuthorJean21*
    • CommentTimeJun 1st 2010
     
    When you count the years your LO has had AD are you including the years before the diagnosis? If so I have been on this ride for about 15 years. When I think back the signs were there but I didn't have a clue back then as to what they meant!
    •  
      CommentAuthormoorsb*
    • CommentTimeJun 1st 2010
     
    I am not sure where the 20 more years is comming from. My understanding is that the average is 8 yrs. I may be totally wrong. I am 9 yrs younger than my DW 64. I think everyone on this site knows about what you are feeling. I hope it is not 20 years.
  4.  
    In my reading over the weekend I ran across a comment from a husband caring for his AD wife. To paraphrase, he said that it had been 17 years since the beginning of their journey into the twilight, it was now the middle of the night and he thought that dawn would never break. I think that sums it up for a lot of us. He also stated that he did not realize that it could hit so early and torture for so long. I think we all wish for a short journey, but that may not be the case.
  5.  
    True, we don't know. I just figure it'll be a haul since his personality lights went out sufficiently that he was no longer my partner roughly 5 years ago, yet the rate at which we're downshifting is so very slow that I assume it's going to go on for a long, long time. But we don't know.
    • CommentAuthormaryd
    • CommentTimeJun 1st 2010
     
    I know it has been at least 10 years and more likely 15-20. He retired at 53 in1991 and cited some faulty planning that would make it more advantageous to us financially. I remember trying to give him ginkgo biloba in 1995. He messed up the income taxes for a couple of years by 1999. I took over shortly after that. I do not see an end in sight for us. He looks normal to anyone who does not know him. He is by my side constantly, but it is hard to take him places. He goes to a day program one half day, which I want to increase. I am so tired of it all.
    • CommentAuthorLFL
    • CommentTimeJun 1st 2010
     
    katie, thanks for the post -I'm feeling the same way. DH just turned 60, dx'd at 58 and is on a 1.5 year plateau. Physically healthy, cannot (won't) do anything by himself, talks to others but won't talk with me. On one hand I'm happy he has not declined significantly during this time, but then I think can I really do this for 20 more years? And I know the finances won't cover us the next 20 years due to the outrageous costs of this disease. I too am tired of it all.
  6.  
    The motivation comment rang a bell for me but at the time it was in full force I didn't have a clue what was going on..things like I have cleaned the garage but you need to deal with your work bench and sort out those tools etc.. or we need to get the windows replaced due to condensation...things like this...I would get the "yeah I'll get to it but it never got done and I was getting frustrated and upset and thought it was just me cuz I went through the great "Pause" early.. Now looking back I get it so while DH got the DX last fall this has been going on for sometime despite his ability to do the check book, read and recall what he read, etc..I just thought he was shining me off on chores in preference for his favorite passtimes and hobbies of golf and fishing.
    There is no meaningful conversation here now either..and I have to re explain why he has to take meds etc..
    I just got back two days ago from Iceland..and when asked if I was glad to be home I said no..glad to see DH but no not glad to be back to all of this.. I said I just marched back into hell.
    • CommentAuthorCharlotte
    • CommentTimeJun 1st 2010
     
    As I have posted on other threads, my FIL was diagnosed in the late 80s but in 1985 when we were visiting his behavior was changing. When we went to do goodbye hugs, when I went to hug him he grabbed me a laid a smacker on my lips. I felt violated (like being raped again) but said nothing. When he was diagnosed it made sense to me. We received a call at 12:30am last night that his 25+ year battle has finally ended.

    With that said, I pray my hb does not follow in his dad's footsteps. I want the disease to go fast, but what is fast? In 2004 he was fired from a job he had been at for 11 years for doing something that he knew in his mind was wrong, but emotionally did not seem to think it was wrong. But was that the first sign or was the incident in 1983 which later was diagnosed 'detached personality disorder' a first sign of what was to come? It was also shortly before that I walked into our business after closing and found him walking around buck naked from the waste down except for his shoes and did not seem aware of it. (this is the first I have spoken of it - I never said anything to him either). That would put him in his mid 30s. But definitely 2006 there were symptoms/signs. We joked that they started showing up after visiting his sister who had been diagnosed in 2005 with EOAD. What the trigger then was we had gone to Florida to workamp where the managers and owner were verbally abusive to him. This is a guy who got along with everyone, but one day he flipped the wrong switch and was draining the pool (he had been shown once and give written instructions but he is a hands on learner, not book). The manager was so irate people said he was beet red and people were coming out of their trailers to see what the screaming was about. He was so humiliated he quit on the spot and was never the same afterwards.

    Actually researching detached personality disorder, it can apply to AD victims.
    •  
      CommentAuthorJeanetteB
    • CommentTimeJun 1st 2010
     
    Wow -- I thought that early onset went faster. We are both 67, so who knows? The decline has been going at about one stage per year for the last three years.
    • CommentAuthorCharlotte
    • CommentTimeJun 1st 2010
     
    Jeanette - they say 7-10 years, but we are comparing when symptoms first started or when diagnosed. I think the 7-10 years is after diagnosis. My FIL was 64 that year I experienced the odd behavior. He is not the normal for this disease. There are spouses here that have lived for years after diagnosis and those that have gone relatively fast. Unfortunately we do not know how fast our spouses will progress thru them. After they find the cause and a way to stop it then maybe they can figure how why some the disease progresses faster than in others.

    Oh, my FIL's brain and eyes were both donated for research there in Boston. Since they have discovered they can see signs of AD before symptoms start in the eyes, they were thrilled to get the two together. And, maybe they will be able to get info as to why he progressed so slowly. He never took any AD meds until 2001 when he went into the VA facility. Until them my MIL gave him gingko, St Johns Wort and their tea 4 times a day.
    • CommentAuthoracvann
    • CommentTimeJun 1st 2010
     
    Judging by those in my support group and from what I've read, there is just no way of knowing how long. "They" do say that 8 years after diagnosis is "average" but "they" are basing this conclusion upon data culled mostly from studies of people in their 70s and 80s. My wife, who just turned 64 last month ... officially diagnosed at 63 but should have been diagnosed at 61 ... has declined so fast recently that I'd be shocked if she even lasted 8 years. Her latest decline, about 4 months ago, has resulted in virtually zero short term memory now. Since she usually plateaus for about 4 months before falling off another cliff, I'm just hoping to get through June with no further decline. I cannot imagine, though, in my wildest dreams that her battle with AD will last for even 10 years, let alone 20.
  7.  
    "They" are the same experts that calculate how much oil is leaking from the BP well in the Gulf...."They" are also the ones who predict a higher activity hurricane season this year. and "They" are the ones that say the economic recovery is working, and everything will be back to normal next year....
  8.  
    I am curious--those of you who have married someone at least 10 years older than yourselves. Did you ever think that you might become your spouse's caregiver later on when you married or as the years went by? Did you consider that as a factor in deciding whether to marry an "older" person? I've read a lot of posts here from people in May/December marriages, but don't remember anyone mentioning whether it was a role they had always known they would take on.
    • CommentAuthorThunder*
    • CommentTimeJun 1st 2010 edited
     
    marilyninMD, I am only 3 years younger than my wife but I not only considered it... I had a pretty good idea from day one that this would be my future. My wife's mother and grandmother both died in their fifties from the same thing. The years that I did spend with my wife before she became sick were heaven on earth. My wife was the sweetest woman on earth and I would do it again. I must say, however, no one can imagine how this feels until it happens. My sense of all this twenty seven years ago doesn't compare to the reality of it.
    • CommentAuthorWeejun*
    • CommentTimeJun 1st 2010
     
    Nope, never gave it a thought. Just did the sickness and health vow same as I did 12 years before when I married somebody near my own age.
  9.  
    I am 14 years younger. We married at 22 and 36. I had an assumption, going in, that I would be widowed in my 60s and wouldn't like it very much, but it was price I was willing to pay. Men in J's family tended to die of heart attacks, strokes...fast acting things, and that's what I figured on. Spending most of my 40s (so far) a semi-widow with an uncertain quantity of years left to live in limbo was a thought that never crossed my mind. Why would it? This illness did not exist anywhere in J's extended family.
  10.  
    As most of you know, I try very hard to be upbeat, make jokes and kid around, make plans for the future to give me something to hold on to, and try to help others get through this by sharing our experiences. We all know what the end play is going to be, just not WHEN it will occur. I've been hearing the 8 years from diagnosis for the "average" for those diagnosed at a younger age. Those diagnosed in their 70s and 80s tend to live with it longer I've been told. I don't know why. I just know that there are several here whose spice are working on 10 years or more, and some whose spice have passed away in 3 years from diagnosis (even though they had it longer - just hid it better and/or refused to go to the doctor).

    Marilyn, my husband is four years older than me and we married at 18/22. I don't intend to ever get myself in a position to have to be a caregiver again. I have high esteem for those widows/widowers here who have been married before (some more than once) and found greater love and would do it again.
    • CommentAuthorJean21*
    • CommentTimeJun 2nd 2010
     
    My DH is 11 years older than me and was dx'd in '08. I never gave a thought to AD or anything else, of course like most people I didn't have a clue about AD anyway. He seems to be better now than when he was first dx'd so I guess I can thank the Aricept, Namenda and of course the Sertraline for his hallucinations. He doesn't seem to be progressing very fast...right now he is shaving and showering and is still continent. My biggest problem is his memory. I try not to have conversations that could have a follow up because he wouldn't remember it and I would have to try and explain IN DETAIL the original conversations.
  11.  
    Thunder--You echo my thoughts exactly. Although Steve is only 4 years older than me, based on family history, we knew EOAD was very possible. I would also do it all over again--he is worth it. And yes, my sense of this before it happened was nowhere near what the experience actually is, even knowing the issues they faced with his Dad.

    And Mary--I, too, never want to put myself into a position where I will be a caregiver again.
    •  
      CommentAuthorpamsc*
    • CommentTimeJun 2nd 2010
     
    My husband is 10 years older than me. We married when I was 32 and he was 42, and we had our first kid just before my 35th birthday. I did expect to outlive him and be a widow, but caregiving during a slow decline never occurred to me, even though my grandmother died of Alzheimers. My father and my stepfather both died suddenly. I'm just thankful that my stepfather gave both my kids college funds that will pay the whole cost of college.
    • CommentAuthorphil4:13*
    • CommentTimeJun 2nd 2010
     
    My DH is 77 and I am 64 and I never gave long term care a thought when we married. I realized I may outlive him by a few years but there was no AD history at that time nor was it really a diagnosis back then. We've been married 41 years and until his brother died in a nursing home because of dementia I never thought of the dx. affecting us. I have read where it is more common in diabetics and that does run in his family. His father lived into his 90's and I always assumed he would do the same. He has showed signs of the dx for almost 10 years now, is at stage 5/6 and is otherwise healthy as a horse.
  12.  
    My husband is 8 years older than I am. My first husband was 8 years older than I am. My first husband died at 45 of a heart attack and my current husband was diagnosed with FTD at 67. I don't think there is ever any way to know just what life has in store for us and most of us would not let it stop us from being with someone we love even if we did know how it would end.
  13.  
    I agree, ehamilton, with what you said. My DH is 17 years older than me. I never gave "caregiving" a thought when we fell in love. He was/is the love of my life, and I'll continue down this path with him - whatever may come. I try to deal with it moment by moment, hour by hour and day by day. By the way, his first wife died of MS and he took care of her for many years before he had to place her. So, he has done his share of caregiving too and never fails to thank me for what I do for him. He's my love.
    • CommentAuthorbriegull*
    • CommentTimeJun 2nd 2010
     
    My husband's 11 years older than I am and has had chronic phlebitis since he was 14.. When we married I was 21 and he was 32. I always knew I'd have to care for him somehow, although that was before his father had dementia, and even when he did I didn't think of L. getting it. I quit working at a full time job at 62 for many reasons, one being that I wanted to have some time to travel before I had to care for him. And I did travel, for ten years, much longer than I would have predicted. Which is why, now, for me, I can handle a good bit of caregiving. In fact I think right now I'm relaxing a bit more than I did when he was on the plateau and I was trying to do more and more by myself.
    •  
      CommentAuthorJeanetteB
    • CommentTimeJun 2nd 2010
     
    Briegull, good for you, getting that travel in!
    •  
      CommentAuthordeb112958
    • CommentTimeJun 2nd 2010
     
    My husband is 9 years older than me and I never thought I would become his caregiver like I am now. There was no dementia in his family just cancer. I did take care of him through his cancer treatments 6 years ago but there was/is hope with cancer. Why did he overcome the cancer just to have FTD start to take him 4 years later? I have always known in my brain, that I would outlive him but not in this way.
    • CommentAuthorCharlotte
    • CommentTimeMar 23rd 2013
     
    This month marks 5 years since his diagnosis. He is progressing so slowly I dread the 20+ years his dad survived with it. I wish I knew how his sister was doing - I just know she is in a locked facility due to being a 'runner' like their dad was. I know her short term memory is gone much like my husband's.

    Every so often it hits me little things he has lost. I tried to 'stage' him and the best I can do is early stage 5. He does wear the same close for a week changing just the underwear. He can't see changing since he just sits around or goes out walking. He seems to need to get out and walk more often, even right after he had walked, saying he needs to walk the stiffness out or 'I need to keep my cardiovascular system in shape'. I know he could never live alone, he has no drive to do anything, can't make decisions - leaves it all up to me, and unless he has a shopping cart to push I notice he is walking even closer behind me - which we all know drives us crazy.

    Last winter when he went out walking while I was working in the sub-freezing temps which resulted in frostbite showed me he has poor judgement. He keeps alert to the day and week cause he has a calendar right next to him. He remembers to take his meds although at night he forgets if he did, so it is not uncommon if he gets up a couple times to check. The only RX he takes is in the morning, the rest are vitamins, minerals and supplements.

    We watch the same old programs - the old westerns, HGTV, Storage Wars, etc. - that are easy to follow or he doesn't need to remember what just happened.

    Will it be 20 more years? God, I pray it is not for both our sakes

    I am tired of people saying 'he looks good' when he tells them he has dementia or Alzheimer's - never know which he will say. This usually results when I tell them I don't know how much longer I will be able to work - it depends on his health.

    I am looking for the place I want to settle. I love living where the sun shines almost every day. I thought of Arizona where the winters are mild and the summers hot. My other #1 choice is back in the area I worked the last two summers in Eastern Washington. The stress here in the office is getting me down, but am I ready to park it for the duration? Am I ready to give up my dream hoping I will still be young enough when this is over to do anything?
    • CommentAuthorLFL
    • CommentTimeMar 23rd 2013
     
    Charlotte, my husband was dxd almost the same time as yours but has declined significantly over the past 2 years due to 2 hospitializations because of aspiration or seizures. He was on a plateau for about 2.5 years. When he was dxd everyone told me he was declining so quickly he'd never make 5 years. Well we're at 5 years, he's now in mid-late stage 6 (he's got FTD) and he's still going strong. At this stage it looks like he'll go another 5 years at least and quite frankly I'm not sure I will. Truly I pray he will not last that long or longer because we will have no money left and I have a progressive debilating disease and will need my own care. I was 57 when he was dxd and will turn 62 this year and no, I will not be young enough or healthy enough when this is over. I've given up my dreams of living part-time in a warm, sunny climate. Not happening on this journey. I pray you are luckier than I am.
    • CommentAuthorJazzy
    • CommentTimeMar 24th 2013
     
    Oh my Charlotte! I just heard my Bv FTD described by you. He has no initiative, keeps track of his weight walks continually when he gets stressed. He is very concerned about his heart and cholesterol. He is on citalopram in the morning and trazadone at night. The trazadone helps him sleep at night and takes the edge off the day.
    He is in an adult day care program three days a week. I pay $20.00 a day for this but I would be in bg trouble with my stress level if I didn't do this. He talk so much that you just want to scream. He stared this 8 years ago but didn't get diagnosed until last July. He has declined quite bait in the last few months and with the added AD, he is getting much quieter and sleeps more. He gets very tired now as he has lost body mass and has very little physical strength. I have ended up in the emerg twice now with anxiety attacks but it sure felt like a heart attack. We have to try as hard as we can to take care of our selves and that is so difficult. People don't see our DH's as we do. They don't get to see the real person suffering from this terrible disease and how much we suffer right along be it watching them and caring for them or financially.
    • CommentAuthorAnn*
    • CommentTimeMar 24th 2013
     
    We've done our 20 years of AD and want to end.I dearly love my DH but we acn't handle much more.
    • CommentAuthorAnn*
    • CommentTimeMar 24th 2013
     
    Jazzy,My DH talks alot too and could drive anyone crazy.I can't read a book,listen to TV.talk on the phone or anything else.I wish I could find his off button.
    • CommentAuthorxox
    • CommentTimeMar 24th 2013
     
    Ann, dealing with that right now. So glad my son went to my FIL for the week to give him some respite. It has been getting much worse the past 2 weeks. Thankfully L is upstairs right now watching TV while I am downstairs on the computer. I think some of the talking the other day was just to keep herself on task.

    This is true ambiguous loss. The body is here, the mind mostly isn't (but sometimes is). We wish to be over but don't want to lose them. The only answer is to accept the ambiguity of the situation and of our own feelings.

    Easier said than done. Hasn't been helping me lately.
    • CommentAuthorlulliebird
    • CommentTimeMar 26th 2013
     
    Twenty years? Yikes, You've got to be kidding! I can't see myself in this two more years. My husband was offically DX with FTD last fall and prior for the last few years doctors were monitoring him for possible alzheimers which now his medical doctor concur he has (mild/moderate alzheimers in addition to the FTD)

    As Charlotte's husband he only changes his clothes once a week and only showers once a week (always on Sundays) He won't shave and sometimes goes several days without combing his hair, but brushes his teeth twice daily. He has no motivation to do anything. He sleeps until ten or eleven in the morning then goes straight to the couch and works on his crossword puzzles for hours upon hours. After dinner he will replace the crosswords with channel surfering. Evidently he may find a show he will watch. There is no meaningful conversation...in fact, there's no conversation between us at all. He has no desire to talk to relatives or friends on the phone either. He doesn't go to daycare or the senior center as he likes being alone most of the time. He has gained quite a bit of weight as he craves sweets and blames me for his weight gain because I fix too much for him! He's very self-centered and it not aware of anyone's feelings but his own. He also is very sarcastic at times. When we go to the doctor's office he puts up a good show and seems pretty with it. Kinda makes a liar out of me to others!

    I wish this was over as his quality of life is not good. We don't have long term care insurance. We have too much money to qualify for VA benefits, but not enough to float many years in the nursing home. This would wipe out all our savings entirely. This would leave me little or nothing to live on. God I hate this disease and what it's done to our lives.
    • CommentAuthoryhouniey
    • CommentTimeMar 26th 2013
     
    Lulliebird,my Dh was turned down for LTC ins.But I am going to have to place him or die trying to care for him(my health is failing),so I'll have to spend out savings to pay for a NH,but it's better to be broke than dead.At least ,that's my way of thinking.
    • CommentAuthorlulliebird
    • CommentTimeMar 26th 2013 edited
     
    yhouniey, I am sorry to hear that you they turned your DH down for LTC insurance...Yes, you are so correct that it's better to be in good health and have no money than the other. This AZ dementia takes a huge toll on the spouse's health. I don't think that most people are educated that it's not the AZ patient who suffers as much in the later stages, but rather those caretaker spouses.

    Take care yhouniey, and I hope you find some assistance soon, to help you carry on in this long lonely journey. ((hugs))
  14.  
    I also can't imagine many more years of this. We also have too much money to qualify for any assistance. I figured I would put off placing him for as long as I can. Now I suddenly became the caretaker for 2 people. My DD who lives with us hurt her back at work last week. Now I am running her to doctors, and today for a MRI. I have to help her do anything that requires bending.

    I have been trying to do my homework and visit some facilities. I saw a couple in the 2 weeks before, but have had to cancel the appointment I had for this week.

    I too have been having problems with my back with all the reaching and stretching, especially in the shower. I have to wash every part of him while he sits like a lump on the shower stool. Then I have to help him dress. The Depends, jeans, socks and shoes are the worst. Now I am having trouble with my foot and have been limping around trying to please everyone. Just feeling sorry for myself.
    • CommentAuthorlulliebird
    • CommentTimeMar 26th 2013
     
    MaryinPA,

    Sorry to hear that you are having a rough day. Sounds like you are in need of a much needed respise. Do take care of yourself dear.

    It's very disturbing to find out that in the end when you saved and pinched pennies all your life you are punished because there isn't any financial assistance for our loved ones. I haven't reached the stage to start my homework yet but I will try and keep him at home as long as possible. Possibly a live in helper would be more affordable? I have no idea how to locate an individual who would be qualified for this position.

    Take care of your foot and I hopefully tomorrow you will be feeling stronger!
    •  
      CommentAuthorJudithKB*
    • CommentTimeMar 26th 2013
     
    This is what I did when I knew I needed help and we also didn't qualify for gov. paid assistance. I had a cleaning lady that came every 3 weeks. He liked the cleaning lady and so did I. I asked her and she agreed to come every other week and then once every week as he got worse and I needed more help. She didn't do anything for him except maybe help him with his breakfast and maybe lunch and visit with him. That didn't increase my expenditures very much and my dh wasn't that bad then. Actually, I did this more for myself then for him. I needed time to go out alone and shop, etc. I always had to take him with me because I didn't trust leaving him alone and he had quit driving maybe a year earlier on orders from the dr. and I refused to get in the car with him if he insisted on driving.

    Then he had to go to the VA dr. and the nurse suggested I might need help. I said...yes...she told me about this service that was available at a reduced cost and she would send them out to evaluated him. They sent several people out and everyone agreed he needed supervision. Now these helpers also helped him shower, got his clothes out and fixed him breakfast and lunch. At first they came 2 times a week and later they came 3 times and then even later they came every day. for 3 hours a day @ $20/hr. I waited for the bill and didn't get one...I called the VA and they said the service was free to me because my
    husband was getting a VA pension for a service connected disability. But, even at $20/hr for 2 hours (that was their min.) I could afford the 2 or 3 days a week and it was a major help to me. Shortly after they came every day hospice was sent by the VA and the help was increased. This expenditure was well worth it for me or I could not have continued on and kept my dh at home and I knew the cost to us for ASF would be much greater. But, once he started down hil...he went down hill at record speed. Hope this might help you someone on the approx. amount of care needed and the expenditures.
    •  
      CommentAuthorJudithKB*
    • CommentTimeMar 26th 2013
     
    Continuation of above: The helpers couldn't do anything on my behalf. But, early on when they came we were sleeping in the same bed and they would change our bed, wash the sheets and put them back on. Also, I would keep his clothes to be washed and they would wash his clothes and put them away. They could also dust the bedroom and cleanup his bathroom. It was amazing how much help that was and then I cut back the cleaning lady as I increased their help. The name of the service which is nationwide was VNA Support Services. They have helpers that are not nurses and do the support work .
    • CommentAuthorLFL
    • CommentTimeMar 27th 2013
     
    MaryinPA, perhaps a call/visit to the social worker at your local Area Office On Aging or to the local chapter of the Alzheimer's association might be a start in finding some help. Ask them not only for Home Health Crae Agencies but also if they know of anyone who does the work privately, no through an Agency. That way you would have choices. Both Agencies and Private aides have their pros and cons. I'm in NJ and aides through an agency cost $20.00-$22.00/hr with a 3 hour minimum.
  15.  
    I do have some help. I have a "cleaning Lady" who comes once a week for 3 hours or more if I have to be out longer. About 6 weeks ago I added a person fron a Home Help agency for another 3 or 4 hours a week. It was supposed to be a man who could help with the shower but he asked to be reassigned after 2 weeks. DH refuses to let anyone else help in the shower.

    I am thinking of adding one more morning a week. They do help with the laundry and the bed which has to be done each day.

    Guess I was having a bad day yesterday. Today was a pretty good day. Just send some spring days so I can work outside.
    • CommentAuthorlulliebird
    • CommentTimeMar 27th 2013 edited
     
    JudithKB, Yes I was thinking that I may start looking into a cleaning woman just to come in monthly and see how it goes. It's hard to find someone trustworthy, but I need to start my search very shortly. I really don't need help keeping up on the interior of my home, but I like that idea of leaving her after some time just so I run some errands and have some Lullie-time.

    I have never heard of VNA, but I will definetly search this organization out on the internet. It's comforting to know that I have other options rather than "daycare" which he would NEVER go for. I can't even get him to go to a senior center as he says, "I don't want to be around a bunch of old people".

    I really will avoid NH at all costs because without the VA assistance or medicare assistance we can't afford it. If I was force to evidently place him in NH his disease could linger many years. The neuro guy has never given me a time frame, but then I have never asked. He's declining so very quickly, but then he may level off and plateau there for sometime. There is so much to consider and evaluate. It's bad enough we have to deal with the pit of hell disease and then have the double worries of money. It stinks!

    Thank you so very much JudithKB for taking the time to write and give me some great suggestions. I really appreciate it. :)
    •  
      CommentAuthorJudithKB*
    • CommentTimeMar 27th 2013
     
    lullilbird: I do think you will find it very helpful to get the cleaning lady. I just asked a couple of family members that work and they didn't have cleaning ladies, but they ask other gals they worked with. That is how I found my gal. I didn't leave the house for the first 3 times she came and by then my dh got use to her. Since he has passed she tells me about the conversations she had with him. That is kind of interesting for me. She is a very quite person. Now that I am free to come and go she dog sits for me. She picks up my dog and brings her back here. I love it. This Sat. I am taking my SIL's mother to a musical and I will have her dog sit for me because we will be gone to Palm Springs all day.

    The ALF was a major concern for me until I found out the VA contracts with various nursing homes and my dh could get free care there. But, I really wanted to not have to place him in a nursing home. About 2 months before he died and I was so tired I did pay to place him in ALF for two weeks so I could recoup. The first week I basically stayed home and watched movies. I would go most every day the second week and take him out for lunch. That 2 weeks saved my life.

    My dh's neuro would not give me a time frame either. When I knew he was getting really bad and the Hospice dr. told me he maybe had six months. But, the neuro said he never gives a time frame unless he is really sure it is less then a year. Well...he only lasted maybe 2 months when these two drs told me that. I don't think they really have a clear idea because all these people are different.
  16.  
    Katie, my husband was diagnosed in 2009 at the age of 58 and had signs at least 5 years earlier. He too was in perfect health. I used to wonder if I would ever be able to do this and if I would ever live long enough to care for him to the end, but I did both. My Lloyd passed away in the comfort of his own home in his own bed February 18 of this year. His death certificate named debility due to Alzheimer's as cause of death. This disease plays hell with everyone closely involved. I know you think you are in a nightmare and would like to be able to pinch yourself awake, but we all are here and we will help get you through this. These wonderful people are a wealth of information. They have been through it and there is no one wiser than those who have made the journey! {{{Hugs}}}
    •  
      CommentAuthorNikki
    • CommentTimeMay 3rd 2013
     
    I have been wanting to comment on this post since it was first written close to 3 years ago. I never did because I know the way I feel is not the way the majority does. I have since come to realize that though that may be true, my feelings have worth too.

    So I will just say it....... I wish I COULD have 20 more years! Even with Lynn in late stage. His world is a happy one, he knows a peace in this world most never will. If he could stay even just as he is now, with no pain, I would wish he could live forever. I visit him every day, it brings such joy to my heart to bring a smile to his face, to make him laugh that belly laugh of his, to hear his voice, to feel his touch. I feel blessed and I could happily live out the rest of my days just as I am now.
  17.  
    Nicki,
    Your enduring love to Lynn is so evident though each and every post I read. Lloyd is a very blessed man to have you in his life. Your compassion, tenderness, and sensitivity are truly and inspiration! Thank you for commenting on this post