Dementia and careing for our parents?

[boopster]

My dad was terrified of being put in a nursing home. He had seen so many people he new just dumped in homes. And despite laws to protect patients, conditions in some of these places are still awful. Several times after a hospitalization, Dad's doctors sent him to different convalescent homes for "intermediate" care because they didn't think we could provide the care he needed. I can tell you some horror stories -- from the place that didn't give him his heart and emphysema medications for two days because the pharmacy they get deep discounts from (owned by the same owner) didn't have them in stock, to the place where he shared a room with a patient with dementia who moaned and cried non-stop, to the place where patients were allowed to shower only on odd or even days regardless of their need.

I actually showed up at the first place the day after Dad was admitted with all of his medicines from home and they told me I could not give them. To a man who depended on them to keep his heart beating! I gave them anyway and told them they were free to call the police -- and we'd see who won that battle. We kept someone in the room with Dad during all visiting hours after that until we got him out -- to make sure they gave him all his meds and protect him from retaliation. I was so relieved when we got him out of there. In hindsight, I would have called his doctor and demanded that he be moved immediately. But with so much stress going on, you don't always think as clearly as you should.

[Patti]

I was the primary care giver for my Dad for 3 years after my Mom passed away suddenly. Fortunately, I had lost my job around the time they needed to sell their home and move closer to me. We put them in a senior building with no assisted care because my Mom was able to care for him with my help and some nursing care 2 times a week. When my Mom passed unexpectedly after only a year by me, we were panicked as to what to do with my Dad. His biggest fear was a nursing home. We managed to keep him in his apartment with a life alert, 2 weekly nursing visits and a bath lady. We set up 3 daily shifts so that someone was there for each meal and bed time. We found a women who was a godsend, she would come in once a day and give him breakfast and his morning meds and sit with him a bit. He also was a colostomy patient which really complicated his living on his own but we managed. His dementia would have him saying people were spying on him, stealing from him and no one could convince him otherwise. He also had an imaginary friend Buddy who lived under his bed and we had to leave food out for him too. He would get frustrated when we didn't believe the crazy stories he told us but wasn't violent, Thank God. Looking back I don't know how we did it but we went day by day. Thankfully with the money from the sale of their home we were able to pay for help, his ridiculously expensive medicines and the apartment. In the end when the cancer pain got to much to manage at home we had to take him to the nursing home and he was there less than a month before he passed away. I was just so thankful we were able to keep him on his own until the very end. It was a very difficult 3 years but I wouldn't trade it for anything. I had so many long conversations with my Dad and just spending that special time with him meant so much for both of us. Every time I left he would say I love you Honey, and be careful I don't know what I would do with out you. My advice to anyone living with this is get help if you can and treasure the time as it goes by so quickly in hindsight.

[Patti]

One more thing, does anyone have a sibling that does not help or even visit their parent?[/QUOTE]

I Have 2 brothers and a sister. My sister took early retirement 6 months after my Mom passed to help me out. My one brother came every Monday after work
and stayed with him from 4-10 pm. My other brother never came or called and my dad would always ask for him. I don't know how he lives with himself but he does.

[Ringo1]

Originally Posted by gemy

That is exceedingly worrisome. My husband and I have talked about this. We will need to come up with some creative solutions soon. Many couples elected or just didn't have children, so that is not an option.

But even with children, it is very hard to care for someone with dementia. Eventually impossible in the home environment. I can't tell you the number of phone calls I got and had to leave work to find my Dad, who was out wandering. I tried putting an alarm on the doors, but Mom would turn it off, because the noise bothered her, then out the door Dad would go. In fact it was that wandering that eventually forced my hand to put Dad in a home. I still remember vividly one Jan evening at midnight, a knocking of the front door, I hurriedly put on housecoat to find my Dad in summer pj's and slippers and two policeman asking me if I knew this man. It must have been -10 degrees out there. I then slept in the living room, until Dad went into his nursing home.
The next day I called our social services, and the lady there was wonderful. She said she'd tried to swing some things, to get Dad in a nursing home ASAP. If she had put him on an emergency coding, he could have gone anywhere in the province; ie 100's of miles away. She was as good as her word, one week later I was moving Dad into the home.

Oh, I have no illusions that my son will be taking care of me in my old age! I really think I would rather be in a nursing home than have my son take care of me.

Of course, I say that NOW . . . . .

[abbey46923]

The only thing that got us through the NH is that i had a cousin who worked there on the same ward that my mom was on, she was able to take care of her on a personal basis and keep tab's on the nurses on the other shifts. But i did have to step in a few times (with the other nurses) and let them know where i stood as to the quality of care my mom was to get. I was there on a daily basis and helped where i could, feeding, bathing, and comforting her because she didn't understand what was happening. To this day she doesn't remember much about those days.

[cory]

I'm so sorry for all of you that have been dealing with elderly parents or relatives going through dementia. It is so difficult for the family to deal with even more so than the person themselves.

My mother has late stage Alzheimer's disease now. She lived with us for years and years and I took care of her while working full time. It was very stressful to deal with on a day to day basis.

She is now in a brand new nursing home with wonderful staff that was built not too far from where we live. It is so hard to see her like this though with such a poor quality of life at this time. She doesn't know us or even who she is at this point in time. It's so sad to see her like this.

[abbey46923]

Originally Posted by Patti

One more thing, does anyone have a sibling that does not help or even visit their parent?

I Have 2 brothers and a sister. My sister took early retirement 6 months after my Mom passed to help me out. My one brother came every Monday after work
and stayed with him from 4-10 pm. My other brother never came or called and my dad would always ask for him. I don't know how he lives with himself but he does.[/QUOTE]

I have 3 brothers, 2 older and i younger who is adopted. The older 2 live to far away, and i do not begrudge them for not helping more than they do. Thier lives have been there for many years before mom became sick. The one i do hold a grude against is the younger one, he live's less than an hour away and has yet to come see her or call her, i have taken her on 2 occasions to see him and still nothing from him. I refuse to do it again, I know she miss's him, so i just try to avoid conversation about him. I feel he should be the most apperciative for the life that my parents gave him.

[Rachael x]

Originally Posted by boopster

My dad was terrified of being put in a nursing home. He had seen so many people he new just dumped in homes. And despite laws to protect patients, conditions in some of these places are still awful. Several times after a hospitalization, Dad's doctors sent him to different convalescent homes for "intermediate" care because they didn't think we could provide the care he needed. I can tell you some horror stories -- from the place that didn't give him his heart and emphysema medications for two days because the pharmacy they get deep discounts from (owned by the same owner) didn't have them in stock, to the place where he shared a room with a patient with dementia who moaned and cried non-stop, to the place where patients were allowed to shower only on odd or even days regardless of their need.

I actually showed up at the first place the day after Dad was admitted with all of his medicines from home and they told me I could not give them. To a man who depended on them to keep his heart beating! I gave them anyway and told them they were free to call the police -- and we'd see who won that battle. We kept someone in the room with Dad during all visiting hours after that until we got him out -- to make sure they gave him all his meds and protect him from retaliation. I was so relieved when we got him out of there. In hindsight, I would have called his doctor and demanded that he be moved immediately. But with so much stress going on, you don't always think as clearly as you should.

Some NH's are really terrible, and it can be very stressful and a great worry trying to make sure our loved ones get the best possible treatment in NH's.
Before my gran passed she spent a few months in a nursing home (she didn't suffer from dementia) she was a very proud women and hated the fact that people had to help her wash and go to the toilet. My nana (her daughter) would visit her every day and do these things for her but she couldnt be there 24/7. The nurses are suposed to check in on the residents a number of times a night and tick off their room numbers on a chart once checked. My gran was not checked at all one night and the nurse pretended she had by ticking her off the chart, this night my gran tried to get up to use the toilet and fell.. she couldnt get up and tried to drag herself for help but couldnt. She spent the whole night on that floor. My nana found her the next morning covered in carpet burns and lying in her own mess.. she never recovered and died 2 days later. This nurse is still working in NH's.....

[Sookie]

I take care of a 95y/o with Alzheimers. She is in the middle stages. Fortunately for her, she can afford around the clock care.

It is so easy for the caregivers and family to burn out when caring for someone with this disease. I know it's hard, but try to see the humor. Some of the things my patient says and does are very funny and I try to not see only the sad part.

I think this is the worst disease - to watch someone lose their minds. I've known my patient for 15 years. She was always the one we couldn't beat at Jeopady or pinochle and now she doesn't recognize her own children on her bad days.

Good luck to anyone who is dealing with this on a daily basis and try not to let it consume you too much. I know it's hard.

[cobden28]

My late mother-in-law had vascular dementia, which was caused by numerous mini-strokes, and when her husband (my husband's stepfather) was himself unable to care for Eileen at home any more she had to go into permanent residential care.

It was so sad, visiting Eileen in hospital and seeing her not recognising her nearest and dearest.

Here in the UK it isn't always easy to find a nursing home that will accept patients with dementia. We were lucky in that Eileen was able to go into one that is within walking distance from where we live.

[Rachael x]

Originally Posted by cobden28

My late mother-in-law had vascular dementia, which was caused by numerous mini-strokes, and when her husband (my husband's stepfather) was himself unable to care for Eileen at home any more she had to go into permanent residential care.

It was so sad, visiting Eileen in hospital and seeing her not recognising her nearest and dearest.

Here in the UK it isn't always easy to find a nursing home that will accept patients with dementia. We were lucky in that Eileen was able to go into one that is within walking distance from where we live.

I agree with this, my grandad also suffers from vascular dementia and there is not enough facilities for dementia patients here.

[janice45]

Originally Posted by Rachael x

My grandad has dementia and sadly he is quite far gone now. He is in a nursing home bacause my nana cant cope with him by herself and although we all try and be there as much as we can, we all work full time. And we cant be there 24/7 to help.
He cant remember who any of us are .anymore and has no idea what is going on half of the time. My dad visits him in the NH every day, so they take pretty good care of him but I think thats because they know he is always there to check on things, unfortunatley not everyone can do this.
I know when we came back off holiday we were horrified to find they had been putting adult diapers on him! He is NOT incontinent, he forgets where the toilets are but he tells you when he needs to go, I think some of the nurses just couldnt be bothered to take him.. needless to say we put an end to that.
But I still think that many nurses dont know how to deal with a dementia patient.
Its a very sad thing to watch a loved one go through this, and we know it will only get worse. But we fill his room with old photographs so he has familiar faces staring back at him and we try to keep things simple for him.
My grandad sings, have you heard of this with dementia patients? He cant talk anymore everything he says he sings, most dosnt make sense.. he's the only person I have heard this from. Wishing you luck.

My mom was in a NH with someone who sang all the time. I guess it's.pretty common.there is no way to know how
dementia will take you away.
My mom only said Mom in her final days
You are right it is not easy and you have to be ever vigilant at the facility that they are at.Saddest to say no one cares like we do

[IamMiasmom]

I am so sorry to hear that so many have been through this. I have had 3 aunts all needed assistance getting proper care with this cruel disease. My father has passed but also showed signs. I worry as our population ages will there be enough GOOD facilities to care for them. My mil also passed after having been ill with it. I just pray as I get older a cure is found. So hard for the caregivers. So many have to care for them, hold jobs and maintain children and events, very stressful.

[Lorraine]

I went through this with my Dad for 5 years after my Mother passed. He was ok until about 10 months after her death. Then he had gotten cancer and with his age at the time 88, plus some signs of dementia, I think the chemo and radiation sped things up astronomically and he very quickly went into dementia. I could only keep him home for about a year. Then he had some small strokes could not get in or out of his wheelchair and I could not lift him. I could not keep up with his 24/7 required care as he would wake several times during the night in confusion and call for me.
Finally I relented and found a fairly good extended care home not far from our home. But I was there several times a week. Once the staff and the home realized I could turn up anytime, they were pretty good with his care but I also never hesistated to give them a boot up the butt if they were not taking care of him. He got sponge baths only with a proper bath once a week. That I could not change as they did not have the staff to do residents any oftener.
It is a horrendous experience for both Dad and I. My brother did not help at all nor did he or his wife have any understanding of what I was going through. That hurt a lot. I was on my own. Well, until he died and the house was going to be sold and money was involved. Then the relatives showed up some of whom I never knew I had. LOL.
So be careful. As the primary caregiver,oing through this will make you vulnerable can bring on depression and other medical issues to yourself just from the stress and sometimes utter feelings of helplessness.
The first meeting I had with home after Dad was admitted there was me, a physiotherapist, a caregiver, nurse, manager of the facility, psychologist. The manager said look around you at the 5 of us. You have been doing our job looking after your dad at hom.
That was an eye opener.
The aftermath after his death was that it took about 3 or 4 years for me to recover, physically and emotionally.
Make sure you take care of yourselves in the process.

[Lorraine]

As for the numbers of the elderly suffering from dementia etc. Well, we have to remember first of all there is an increase of ageing population. Plus there are many medications around in the last 10 or so years that did not exist before that keep people alive.
For example, my grandmother died in 1958 at the age of 71 or soemthing like that. She died of congestive heart failure. Likely if the medications available now were available then, she could have been given heart meds well before she went into heart failure and extended her life. To eventually perhaps end up with dementia or??
I am sure if we go back far enough and perhaps older people on here remember to earlier 1900's, I am sure if someone got dementia, they were considered to have 'lost their mind' or as it was termed 'went mental' and were committed to what were called mental instutions. Indeed I can even remember when women went through menopause and had emotional problems because of hormonal changes in the 40's and 50's likely earlier as well, they were committed to mental institutions.