Dementia is an awful illness. It takes away your mind little by little and you seem not with it but many times your mind is here but just does not seem to be.
witnessing this first hand with my Mom has been no great happiness. she has been such a vital part of all our lives. At me being nearly 70 and she being 97 that is a lot of yers just for me. she has touched so many of us in oh so many ways.
I chose the nursing home she went to by past recommendations and some first hand knowledge and felt it was the best of all those around our town. There are some excellent staff members but an awful lot of people with big titles and long list of letters after their last name but not enough good first hand workers or seeminly so. My poor Mom. Let's see no water at all on an 8 hour shift except what may have been served or offered for a feeding. She can no longer feed herself. so sad, she can not walk or stand and can not remember to push the nurses button to call them for help either. We have found no water vessel available during and 8 hr shift and water from last nights shift there at 11 am. got told tonight that I was intimidating the day staff. I said I have never been there in the am before and they should be good enough as they are the ones who have to get them ready for the day and get them 2 meals and yet they keep dropping the ball. Now we have seen the 3 to 11 staff on week days and week-ends and they are super. so, my complaint is rightous. clothing not buttoned up and to hear my poor Mom say I dont' want anyone to see my bosom and I can't button these buttons anymore. what to do??
go to bed tonight and try to forget it all and simply not go there for a few days while they try to solve the eating problem where she has now lost 17 more pounds and that has happened on the new wing as when she was on the rehab wing she gained weght. Losing so much weight sure shows a decline in her health and it is so very hard to take when you have to ask yourself if they are really doing all that they can to get her to eat and today I fed her for lunch and she ate like a lumber-jack. could nto get enough food.
god Forgive me I can not be there 24/7 as my own helath is in jeopardy. If I could afford private duty care I would do so. There is no money for that. We asked for and fought to get Hospice involved and I wish she was at the Hospice house so I would never have to see that place every again. We have been to so many CARE Plan Meetings where they make promises that the water will be there and so on and the very next day less than 24 hours later it is still the same. What to do?
This was such a terrible time for the whole family. Husband did not want me to go there alone as he wanted to have to be my strength and some days they both napped together, him in a chair and her in her bed. She slept very often through our whole visit. Then, the next day she would be wide awake and say well, did you forget your old Mother, not showing up yesterday and I would say Mom we were here but you slept for 3 hours and we left just before dinner. She did not believe us so a nurse would come in to check her and would say well you are awake for them today and she would say, they weren't here yesterday and the nurse would say oh they are here everyday and you sleep most of your visits away. It was awful.
The night before she died was simply terrible. She was having such trouble breathing and had signed a do nto resuscitate and had talked with us about her wishes so much. She wanted no breathing or feeding tubes. She said they were painful and if God wanted her she was ready to go. The hospice nurse came in and ordered oxygen for her and it did not help much and then he ordered morphine and would not leave until she had been given an injection.. Mom was really gone then and I do not think she knew we were there at all. Her breathing was so awful and I wanted to cancel that DNR and have her moved to the hospital but felt she would only die in transit or away from where she had gotten used too. Going in an ambulance might have frightened her awake and maybe not but she was so far gone. Tough decision and I decided to go with her wishes. at 97 I knew better than to go against her wishes. Our daughter was beside herself but made me promise I would nto try to sit up in a stiff chair beside her bed. There was no recliner for us visitors there.
I woke up after about only 2 hours sleep at around 6:45 a.m. and got dressed to go to the home and my husband simply said, you can not do a thing but let her go with God. He said they will call you. By 8:45 I could not stand it and so I called and she had just gone to Heaven. I felt so bad that she had died without any of us there but it was God's will. My husband came home from work and we picked up my daughter and drove there. My one son was already there and he made sure his grandmother looked as best at they could get her for me. She usually slept without her teeth in and in truth I half expected her to simply wake up and ask what we were all doing there!! Silly fool, that is what I wanted.
She had prepaid for her cremation and we called the funeral home and they came and then we followed them to the home and made our arrangments. I tried to get hold of my parish but nobody was available to come to the funeral home and so we had to make our plans without the aid of a Pirest. I tell you I was so angry at God at that moment as my Mom was such a devout Catholic and to think of her not having a Priest was beyond tolerable. I had relatives to notify and they all said we are coming and I said you don't have to as she wanted no fancy stuff. No flowers and no nothing. They insisted and all of them came and I was honored that they would come to pay her respect and me too when you think about it. I took clother for them to dress her in and the dressed her and brought her out for me to have my own visit with her. I cried like a damn fool but knew she wanted to be with my Dad and her 2 sons, my brothers> I felt like an orphan than and have ever since.
So I ordered food and made a nice little wake Irish stle at my house after the funeral home visitation for the relatives which included several grand children and great grandchildren. I am sure she was saying No Sharon, Elizabeth, I told you not to do this but I also told her Momma, this one is for you and me too so it is done.
then, trying to get her remains buried in the Catholic Cemetery in Ohio was a nightmare. So much red tape with the EPA having to check my dad's grave site for leakage beore they could put her in the plot. They had to test 3 places by law and the site is also available to my husband and I for our ashes to be placed there too. Then, the red tape to send her there. I wanted a priest there for the itnernment and I had to call all around town before I found one that was availabe. My old parish had 2 other funerals at the same time in the same cemetery and I was making arrangments for family members to be there.I finally got a priest from her old Parish who did not know her or me but he said he would be glad to go there. I also asked my nephew who had driven down with all his family to say a few words as he is a Methodist Minsiter and he said he would be glad too. My friends who went in my place said he did a better job than the priest. Quite a shock. I felt nearly dead not being able to get there but hubby with his bad heart and kidney disease was not up to that drive and the cost of the flight is just awful. I could have flown alone but I just could not handle that and Mom understood I am sure.
I told her when she had an afternoon of total clarity that I had worked out a deal with the Catholic Cemtery and she was going to be with Daddy and she said you did, Thank you Sharon, that is where I want to be. So I honored her last wish and got her buried in Blessed Ground by not only a Priest but her Methodist Minister grand-son. She got a great send-off.
Our friends send me pictures which I treasure so much.
There are laws about Elder Abuse and I could have porbably gotten a law suti against that place but what was the point? I only got higher and higher blood pressure and my husbands went lower and lower. His diabetic doctor and my primary care physicain told me we need to stay away for at leas t2 days mid-week. That was very hard but she was so far along she did not even know we had not been there. What a shame and a Blessing all at once. We had to take that break.
My poor brother had just died at aged 60 on May 23rd in Ohio and Mom passed away on September 21. So 2 deaths in less than 4 months. To say that I was spinning I am putting that mildly. My Mom was 97 and wanted to die but my borther told me flat out he wanted to live and get out of that hospital and yet due to negligence in the first hospital he had been in caused his death. A law-suit is pending.
We had driven 1272 miles each way to see him and he was awake and very weak and I knew from speaking with his doctors and his reading his chart that his chances were slim to none. His one son, said, Aunt Sharon, do you think my Daddy has a chance and I said HOney do you want me to answer you truthfully and he said yes, and I looked into his baby blue eyes so like my brothers and said No honey, I think your Dad is going to Heaven very soon and I am not God but I am pretty sure of this.
On Mother's day we stayed nearly all day at the hospital with him but he wasn't very comfortable and yet he did speak a few words to us. He told me he loved me and always had and hugged me and let me hold him in my arms and I sand an Irish Lullabye to him and cradled him in my arms and he said gosh you sounded good Sharon. Mom used to sing that to us and I said yes and he said you sure sang it better than her. We both laughed and he said keep singing to me Sis. I did and he fell back to sleep. We had to start for hom on Tuesday. He went back into ICU on Mother's Day night and my last memory of my Baby Brother was with him with the dan ventilator and looking more dead than alive. The wonderful surgeons worked hard on him and got him off that ventilator and back in a room and his wife had such hopes. so Sad, cause she was just in denial. She called us and said they want to possibly put in back on the ventilator and I said that would be the 4rh time in less than 2 months, isn't that an awful lot. She said yes, I was right and I said, do what you have the right to do as his wife and whatever you decide to do I will stand behind you. He was so weak and could not eat but by tube and hadn't eaten a bite in over a month. My brother looked like a skeleton with skin stretched over it. The memory is etched in my brain. I called the day he died and spoke with his doctor and told him to whisper my goodbye's to him and tell him that is Tootie and that is what he called me said to tell Daddy and our brother Mike hello and that it was ok to just go to sleep to be with the Angels. Hard, my God that was hard. When the doctor leaned over him and whispered to him my brother stopped his constant movement and the doctor and my sister-in-law and her kids all said Terry just seemed to smile.
Then, the last of my brothers went to God. I got the job of going to my Mom's Assited Living Facility to tell her. We all debated but I knew that she would somehow know something was wrong especially since I had not been with her for Mother's Day. I was able to get one of the Priest to meet us there in case she needed him. It was a very hard day for me and one of so many that would follow. Mom did ok but I watched her and knew she was not herself and was really upset. she went to the hospital herself by ambulance on June 22 and took her last steps on June 23 and was dead on September 21. She was so confused she kept telling everyone she was already 98 and her birthday wasn't until November 24.
Last year as in many years that just happened to be our Thanksiving too. It was hard to go to my son's house without her and pretend like nothing was wrong. Awful dang day. But I made it through it and never let anyone know how bad I felt. I just acted like I was so-called normal. I almost didn't even go but knew I had to do that for my grand-son too. Things had to go on as they will when it is my time to
join them all in Heaven.
Since they have both gone on to their better life, I have seen and heard my husband's cardioligist tell him that he was a candidate for instant death due to his severe aortic stenosis and 90 % narrowing of his aortic valve. Candidate for Instant death and I thought God, Please no more and not him.
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