Every so often, my mother will let me know that she wants to go home which is the case today. She says she's not doing anything but eating three meals and staying in bed which is true, but she's chosen not to work with PT. Her sister from out of town called her today and told her that she could go home if she would start walking. I think my mom is also worried about her husband who is looking weak lately and has been falling at home. The last time he and his helper had mom at home she was able to use a walker and feed herself, but was forgetful about medicine. After 8 days, they had all but let her starve, dehydrate and loose all the moving ability she had gained after her stroke in February. I got her into an assisted liviing place, but in April she fell and broke her hip after which she gave up and went to the nursing home. It would be nice if she was healthy enough to go home, but she's not and no one at home is healthy enough for her to go home.
Megan explained to her that the nursing home doctor has seen her once a month and based on his medical opinion, he could not make a safe release of my mother. She went on to say that if he made an unsafe release and something happened to my mother it would come back on him and on the nursing home. She tried to help my mother realize that she was not going into a safe situation with my step-dad nor was she of sound mind and body enough to go home, but if she was willing they could work toward that goal. My mother did not like that at all, but finally agreed. The social worker told my mother that she would see her in the am to start their work. My mom said she wanted all of this in writing.
Otherwise, I picked up one more year of my mother and step-dad's tax returns they are late with. I'll mail in 2007 on Monday. We actually get some money back from the IRS, but it will pay for half of what they owe the state. This news made my mother very happy, but she was not aware that the Feds had been taking money from her account which began in 2005 when they failed to pay taxes in 2004. This did not come to my attention until I got a hold of this tax mess around the first of 2009. '08 should be a piece of cake and then we can have '09 in on its extension time of October 15th. The CPA tells me that my spread sheet, data collection and overall organizing of the entire financial information has reduced his fee by 2/3rds.
I come from a smaller family that's widely scattered, but also with a rich history.
Mom tells me an ancestor on her dad's side was in the revolutionary war. His name was Bullock. How cool is that? I loved my grandpa sooooo much. He passed when I was seven (big generation gaps in our family), but I can still remember sitting on a buggy bench he had tacked onto the side of the farmhouse and watching the garter snake eat frogs on the driveway. Those were the best times.
I've saved lots of family history too. Hub and I collect antiques so it only seems natural.
GOD bless you and all you love.
ADVERTISEMENT
Either mom's dementia has her brain confused or my step-dad and his helper actually told her that they planned to take her to the beach on Thursday. If so, then that could have gotten this I want to go home. theme going again. The nursing home has my note on file from months ago about mom not getting checked out by anyone but by medical personnel to take her to the doctor or to the hospital. I talked with the director of nursing to remind the staff of that fact for some of the staff have changed. My step-dad continues to think that he can over ride both the doctor's orders and my admitting her as her medical POA because he's her husband. He does not like nursing homes and blames it for the weak and immobile condition she is in. He forgets that she did go home to him once after her stroke having regained her mobility in 20 days, but he and the helper just let her sleep, plus did not keep her fed and hydrated. Thus, in 8 days she was about dead.
I do think the poor lady thinks she's only been there for about four weeks because it's only been a few more weeks than that since she got back from another one of her stays in the hospital. I'm thinking now that when I talk with the social worker at the nursing home that we need to schedule this meeting about mom staying there with my step-dad and his helper present.
The previous social worker at the nursing home did not want to have such a meeting because she did not believe that it would do any good. Dealing with my mother's decline is one thing, but to feel like I'm in constant conflict with her husband and his helper is quite another because I'm not geared to naturally be confrontational
Changing the subject back to my mother directly. Last year, she was very happy that we were coming to visit her on her birthday in the nursing home. This year, she evidently does not even want to be reminded that Friday is her birthday. There must be something about this birthday that is raising a sense of I'm going to be here forever which means until I die and that is very understandable.
Right now, I have strained muscles in my upper back which I take prescriptions for a night, but not during the day so that I can drive if needbe. This week our hardwood floors are being refinished and so two of us are cramped into sleeping in the dinning room because the hardwood floors are in the three bedrooms, the hall and living room. It's great seeing their transformation, but I feel a need to be here the entire time they are working although all of the valuables are locked up in the pod or like my laptop, checks, etc. with me in my car.
The thing I'm enjoying the most are the memories of my family reunion which I'd not been able to attend in years. Several of my 50 plus first cousins were not able to attend, but I was so glad to see several from the two families with whom I often visited for a week or two either in the winter or in the summer.
When I was little and dad had me for a visit during the week Christmas came in, we would go to one of his sisters in Ohio. And it the summer, we would visit up there as well until I got older and we started doing a lot of traveling. So, to some degree my first cousins and their parents were my other childhood outside of my other childhood which was great when mom was single and we lived with her mom and my great aunt in that tiny country town as well as when she got married again and we moved to a bigger place to live. When my dad moved from LaGrange, Ill to Hagerstown, MD, my childhood got an additional extra slice. I got to visit while he worked in the summer and I spent the entire day 5 days a week for 3 weeks at the country club. This was apart from our two week trips we always did in August during his summer vacation. My cousins who were there; my dad's youngest brother who was the only one able to attend of the original 6 who are still alive; as well as the aunt whose home I spent many Christmases in who has dementia but definitely recognized me were all so glad to see me.
My aunt whose house I had stayed at so many times was not able to attend the actual reunion itself the day before which meant that she and my uncle stayed home. One of her daughters and her sons made sure to know what time we would come by that Sunday afternoon so that they could be there. We talked about all of us as little kids (8 plus me) gathering in that living room on Christmas morning. Her youngest daughter has been sharing my photos about my family from FB with my aunt.
The boys could not get their heads around the fact that in each family all of the boys shared one big room and all of the girls shared one big room while who ever was the oldest got the private room in the basement.
For some reason, my wife had never believed my dad or my comments that to my aunts and uncles as well as my cousins that it was a big deal for their cousin from the south to visit, but she saw it for herself once again after many years of getting up there a few times 15 or so year ago, and she heard my cousins tell her that as well. My goodness one would think I was the prodigal cousin who had come home in how happy everyone was to see me. I got hugged by almost everyone and most of my female cousins kissed me on the cheek! We all had a great time and no one asked what I was doing with all of my time on disability or why I was no longer working. They were just glad to see me and to see our boys who are now much older and to see my wife again. I learned that one of my cousins was inspired my the photos of my "Man Cave" to improve his own. Well, we are very close in age and always have competed with each other in a healthy sense of the word. I also had fun taking a lot of photos and then later on touching them up with my computer software which a few chose as their profile photos on FB. The joy in their faces was great to see.
While there I learned some answers to some of the questions that we younger first cousins had always wondered about our grandmother and one of our uncles whose deaths were never explained by our parents or the older cousins.. My oldest cousin just turned 62 and is still somewhat of a flower child. and my youngest cousin was there who is 36 which puts me closer to the older end at 53.
Now, almost all are married with children, but not as many as my cousins grew up with whose homes had from 8-13 children. Now we are the adults with kids who are my boys' second cousins. I think my first cousins are their first cousins one removed. My wife is my cousins' cousin-in-law, as well as my aunts and uncles niece-in-law but for some reason she does not get that she is related to them by marriage.
The aunts and uncles who are still alive, plus the 50 some first cousins with spouses of whom we have only lost 3, plus every ones children put our total number over 200.
It is amazing how you have your friendships with the cousins who are older and the nearest to your age, but the younger ones sometimes end up much more aware of you than you are of them for they are still little. Case in point, one of my cousins whose mom was the other sister my dad and I often stayed with. Sue is 7 years younger than I am, but she treated me like I was her big brother. Someone from each of the 6 original families is in charge of the reunion of that year. This was Sue's turn and she did a great job. It was very nice of her to have me say the blessing for our meal. My dad was not happy at all that Sue changed the date, the day and the place of where the reunion had always been, but it sure worked for us who have children in school and my cousins who are teachers which my dad discounts for some reason.
It was sad that this was the first reunion that my dad had ever missed, but we had a great time anyway!!!! I used to be the token protestant among my Roman Catholic cousins, but now many of the ones my age and a lot of the younger ones have branched out into various protestant denominations. I used to be the only one who lived down south or our of state, but now several do plus some have lived oversees and then moved back to another state. There are some who have down syndrome or otherwise handicapped who are still living at home with their parents for they chose to do this and they find ways to help them feel useful and they have lived longer than those whose parents don't keep them at home, but I've not seen any of the over-protection, the self-absorbing intrusiveness of my mother's child centered family style nor the harsh perfectionism of my dad in any of my cousins' parents. I don't know if this is a cultural/sociological thing between the south and the northern mid-west, but if it is I like the Ohio version of family life better!!!!
As I explained to my dad after majoring in sociology in college, the main problem in his marriage was that mom only appeared to be an adult who had her act together but she was a pampered daughter from a southern child centered family and he came from a parent centered family where the children were expected to grow up. In child centered families, the parents seek emotional fulfillment from their children. In parent centered families, the parents seek fulfillment from each other. Thus, this itself also explained the great argument over how to raise me. It wasn't about my dad coming from humble beginnings with 7 siblings in a small house vs mom's wealthy beginnings with 2 siblings in a huge southern house like Gone With the Wind that had a yard man, a cook, a driver, a housekeeper and when I got there a nanny all supported by income from four large farms, etc. It was not about Roman Catholic vs Presbyterian. It was all about family of origin sociological experience and cultural expectations.
Our boys were not old enough to take as much in 15 years ago when we visited as they were this time. They really enjoyed visiting with their second cousins; my first cousins, their great uncles and great aunt! They are a whole lot more fun to be with than my in-laws with the exception of my sister in law or being with my mother's side of the family who are still into that child centered get your emotional fulfillment from your children lifestyle with the exception of my youngest first cousin on that side of the family who thank God rebelled; moved out of state and has her own life and a different family life-style. That side has always had money and land, but when it comes to their family life-style, frankly I don't give a d------!
My cousin Sue is probably the nearest of her 6 sisters to having her mother's wonderful personality. Her mother and father had 13 children as well as were the most awesome team and example of parent-centered family life of the whole group. How I became such an admired cousin of hers, I don't know, but I do know how great it was to see her and my dad's whole side of the family and frankly his absence was something I don't give a d--- about either. It was more fun without him and particularly without his jealous, domineering, narcissistic wife, thank God!!!! It's a funny dynamic in life in both families and sometimes in schools where the people our age are our friends, but some of our greatest fans are the younger once upon whom without realizing it, we had some sort of good influence upon. I sure love my cousins, aunts and uncles! My grandfather came from southern Ohio where his dad worked in the coal mines across the river in W.Va. He decided that he was not going to be drunk like his brothers. He was the only one of them to graduate from high school from which he went on to work for Ohio Electric and as a senior outlined for the company where all of the street lights should go in his home town. Sometimes, during the mining strikes his working after school was the only income they had at times. I still have his electrician's handbook. He was a kind, big man, but I never knew my grandmother because she was dead by that time. BTW, there are coal mines in south eastern Ohio. We drove through that part of W.Va and southern Ohio on our trip to the family reunion and ate lunch where my boys great, great grandfather worked in W.Va.
All in all, I loved the Ohio visit and wished we could have stayed longer!!!!!!!
I try not to use "you" too much and I try not to tell her she's weak or feeble. I don't use the word "home" at all; I call it "the house", or "the yard". And, I definitely put her admittance to the nursing home on the doctor. I tell her, "The doctor prescribed this stay and physical therapy to help you get stronger. You refused the therapy so could not make progress." ...then I change the subject. In this case, I use "YOU" because I want her to realize that it's between her and the doctor. My mother also refused therapy so she could walk. In her case i think she wanted to stay in the nursing home and didn't want to force ME or my brother to say "no, you must stay here" - it's a backwards way of letting me and my brother off the hook.
I know you've been dealing with this for a long time and it wears on ones nerves. It's only natural that you feel frustrated and worn out. I hope you'll take some time for yourself - as long as your Mom and all others are tended to - do something that YOU enjoy and relish every second of it. YOU DESERVE IT!!!
You are a good son, father and husband.
Praying for your peace.
All this has me so wired up tonight plus other things that even my muscle relaxer and pain meds for some injured upper back muscle injuries have not knocked me out. Praise God that I can see my therapist tomorrow.
As unnatural as it is, the nursing home is the only place she can be given her husband's poor health along with my being out of town plus both my wife and I are on disability with our hands also full of one teenager in college and another one about ready to go to college plus a house that does not have any room for any more people which we bought five years ago.
When my grandmother gave up after her broken him, her son and my mom hired around the clock help so that she lived her last years in her home. She did not have long term health care insurance like my mother does, but she had enough money and my uncle knew enough trustworthy people in that small town that this was all possible for her. Unfortunately, this is not possible for my mother.
Since then in April of 2009, she has been just like her mother after her hip surgery and refused to work with PT to regain the ability to walk. Her neurologist tested her muscle reactions a while back and found her lower back muscles not working to help her to stand up from her wheel chair.
She hates being moved from the bed to the chair each day but agrees intellectually that she needs too. Her state of dependency would never let her into an assisted living place now. Her neurologist tried to get her to go to one years ago but she refused. BTW, she is at Guardian Care in Rocky Mount, NC.
For several year prior, my mother has been having seizures and after some time started to forget to take her medicine even with the support of the people hired to take care of her and my step-dad as well as myself calling by phone twice a day at the same time for about a whole year. In March of 2009, she had a stroke and following it went to rehab. She regained her ability to walk with a walker and my step-dad and his helper wanted to care for her at home, but they almost let her die and thus she lost everything gained in 20 days. They still think they can take care of my mom (almost 79) at home even in her increased dependent state with that helper, who is neither a nurse nor a certified home helper as well as only there 4 hours a day with my step-dad only able to function in a wheel chair at 86. My mom just like with the previous non professional hired helping person has decided this person is family and yes they are a nurse. The previous 'helper' helped himself to forging over $12,000 worth of checks and my step-dad is so incompetent that he gave the man some money to help defend himself against them taking him to court which my step-brother worked on.
I called the social worker at the nursing home and explained my mom's request plus her level of care and my step-dad's level of need. Then, I talked with my mother by phone today and explained what the social worker had said that in light of her own health needs, her husbands and that her long term health care coverage will probably not cover 24 hour care at home, she is in the best place to be for right now. Mom wants me to come up there and visit with the social worker about this. I asked her if she would like to have both the social worker and myself meet with her in her room sometime after the social worker goes on a short break from tomorrow through next Monday? She agreed to that and so did the social worker. We will plan that meeting next Monday.
She still wants to go home and thinks that my step-dad and his untrained, uncertified helper can take care of her although she is only there 4 hours a day. I reminded her that the last time that was attempted that she was self mobile which she is not now and that her health failed terribly with them which preceded her borken hip and where she is now. Then she told me about her husband and his female helper were planning to take her on a trip to the beach on Thursday. I just gently and firmly replied "I know that you miss the beach and would love to see it, but I don't see it as a realistic possibility. She thought a bit and said maybe I was right. The one thing she did not want though was to be reminded of her birthday at the end of the month. Later, I called the nursing home staff and reminded them of a note that I put on file months ago about no one checking her out but me and or emergency medical people.
I think one of my mom's biggest fears was about money. I reminded her that the long term health policy she bought in 1996 was basically paying for everything and that as she set it up, they are not longer charging her monthly premiums and that she's already received in benefits more than she ever paid in as premiums. That took a load off of her mind. She tends to forget this but is greatly comforted when reminded of it.
Today, during my visit, she did not say one word about going home. She stated her concern for my step-dad and his helper's observatino that he is failing quickly which I've noticed some too, but I don't see him that much. Mom told me that the nursing home social worker and her talked about my step-dad moving to the nursing home and getting a room with her.
Well, the plan at the moment is the helper is going to take my step-dad to the doctor to see what he thinks about him going to the nursing home where my mother is. I don't know if his veteran's benefits will help in this case or not, but this is a matter which is realy out of my hands and belongs to my step-brother who lives very near and his siblings to deal with.
Given how little money my step-dad has plus his small income per month, the only way he could afford a nursing home where my mother is would involve selling the house and possibly the one at the beach for none of his children have a lot of money to come up with basically $2,500 more a month which is what my step-dad would need on top of his income to live where my mother is. I hope it does not come down to that point because it could become very messy. I'm sure it would upset my mother ot hear that her house is being sold, but would be glad to have her husband with her. As her POA, I would be involved in the possible future sale of one or both houses because her name is on the deed for each. However, I am in the position financially to purchase one or both houses which I would then have them fixed up and turned over to a rental agency to handle. This would provide my step-dad with some needed money and my mother would in a sense not really loose her house. Please understand that this is all speculation of my over active mind tonight and I'm not really certain any of this will take place or take place real soon.
So far "mad" has not worked. The helper who now tends to my step father tried to make her mad to motivate her saying 'well are you just going to lie there and give up just like your mother did?"
My mother lived so much of the year for many years by herself at the beach until she starting having seziures and had to come back home that I'm not sure how connected they ever have been until now in their old age. There's not really much she can actually do since he is in a wheel chair, but companionship in an otherwise empty house would count for something although the depakote keeps her so knocked out.
The PT people have commented to me that my mother is rather pampered and likes to almost be begged to putting forth some effort. She is not a very good patient in that regaurd.
I think at this point, I would like the doctor to play the heavy while I encourage her to get out of that bed so that she's not so bored and can attend things that the nursing home activity director puts on every day.
Good luck.
I can understand how those from our parent's generation may not be adept or interested in using the internet, computers, and all the new technology. I believe that's where we come in. I have read several of AlzCaregiver's blog posts, complete with pictures, of her mother enjoying her daughter's efforts. She is such an inspiration to me, and I have been so encouraged by all she's done. I especially like the one she did about the ballet, and her mom clearly like it as well, as you can see in the pictures. She shares links with it on this site in some of her posts.
I would like to try some of those things with my dad. In fact, she mailed me a wonderful CD of music to help my dad with his Alzheimer's. I have a laptop that I can take along with me on visits to his nursing home.
My dad used to be extremely computer literate. In fact, he helped me out quite a bit while I attended college. He was doing newsletters for various organizations, writing poetry, and operated his business from it. What an amazing world is the internet and computing! I love it, but am just learning, still. I hope to do much more with it in the future. The first time I took my new laptop to dad, I took him picture on it from my built-in webcam. It was amazing! However, he didn't agree, and closed the lid. I don't know if his reaction was "just him," (as in upsetting to him), or due to his advancing disease. Unfortunately, closing the lid was the only way he could communicate that to me. Since then, I haven't pushed it.
My mom had surgery, and I blogged the entire process, every step of the way. People could send her encouraging messages throughout the day. She didn't like it at all, even though it was loved ones who wanted to know how she was doing, and had her best interests at heart. I especially loved showing her a video of sorrow done in sand art. It was meant to encourage her, but she thought it was weird. She was undergoing a lumpectomy for breast Cancer that day. Seems she was not interested in the positives of the internet, and still cannot do anything with it. Mom is still typing away...
My thoughts are with you. Its hard when a person can't and won't help themselves and you are there to watch AND to field the blame and offer explanation to everyone else.
Hugs.
nina