Has Anyone Ever Cared for a Grandparent with Alzheimer's?

Hey S. A-

I thought that I would write to you, as I am caring for my father who suffers from Alheimer's disease. He has entered the end stages and we now are providing at home hospice care for him. It has been a long journey to this point. There have been tons of sacrifice on my part, my mom and my sister's lives. There is anger and frustration and sorrow at what is happening.
This is an awful disease and it is really sh*tty what it does to the person that has it.

I am not sure where you are living, but you should contact the Cleveland Chapter of the Alzheimer's Association (www.alzclv.org) right away. They are a great resource and support system. They may be able to tell you of several programs, such as daycare, bus rides, etc, that you can use.

I feel that I need to tell you the truth. This is the hardest thing you will do. It will test you and your family in everyway. Dealing with it at first seems not so difficult but as the disease progresses it gets worse. I don't want to scare or dicourage you, I feel you have the right to know the truth. Your grandmother can seem fine one day and then wander away and get confused and lost the next. She might become violent and say cruel things. Be prepared for just about anything. This disease is still so unknown. Symptoms that are evident in one person are never seen in another. My grandfather was the wandering type. I first moved to Ohio to care for him. He would wander away often. I finally found that if I placed a large stick across the side walk, he wouldn't cross it and he wouldn't wander out of the yard anymore. My dad never wander but has advanced in his disease very quickly. He is bed bound now. We feed him, change him, clean him, everything. He can get combative and difficult to handle. He is now having difficulty swallowing and we are afraid that soon he won't drink or eat at all and the really hard decisions will have to be made then.

It has been hard, but i wouldn't want it any other way. Somedays you may loose your temper and patients. Somedays you cry, somedays you laugh and remember the good times. It is the greatest honor for me to care for my father. You have to be strong, know when it is time to take a break. You MUST always make time for yourself and your family. It can consume you if you aren't careful. Try to get out and away everyday, and never, ever feel guilty for needing sometime to yourself.Seek support from other members of your extended family,seek support from other care giver's. It is very important that you but you and your family first. It may seem to be an awful thing to say, but if you are sick or can't handle it were will your grandmother go?

I wish you the best and hope that this works out for all of you. If you ever need someone just write ____@____.com,maybe i can help.

peace and light,
G.

S.,
Good luck to you and your family. This will be difficult and it will require you to have very good communication with your husband and children. If she is only in the early stages now it will be a little hard to understand that the things that you read about really can/will happen. She may eventually become delusional (which could be confusing to your girls), forget you and your family, she may become fixated on something and refuse to be redirected causing you to feel crazy. There are all kinds of scenarios that you may not completely understand until you experience them. Routine is key. If you can do the same thing in the same order everyday (awake, hygiene, dressing, breakfast etc.) this will help her to feel safe and know what to expect even if she knows nothing else. You may also want to contact an adult day care provider to give you one or two days a week of errand running and whatever.

I truly respect your decision to care for her in your home but please remember that her safety is paramount. If there comes a time when she is no longer safe in your home, or if she could maybe benefit from some programs that are offered at some facilities please be open to that as an option. Also, if you feel that you are losing your own family in the process of caring for her you may need to reevaluate the situation and take the appropriate course of action. Join a support group and read all the information you can. It will help. Good luck to you
~L.

HI S.- I cared for my great grandma who had AD for 5 years before she passed away. Although, I was not married at the time, While in college at Mount Union, I completed a 2 year study on the effects AD has on caregivers. In my reaserch, I found that it is more mentally and emotionally draining than anything. I recommend that you and your husband communicate a lot and stay strong for eachother. It is very hard to watch someone deteriorate from AD. It is very easy to get annoyed by the small things that Gandma may not do just as she had done them before. Remember too that she feels the frustation of her mental helth failing just as much as you do.
R.

S.,
There are a lot of safety concerns you have to deal with. My husband's family has someone with Alzheimers and they were against a nursing home too. However, many time patients become very mean with this disease and it takes everything out of you and your relationships.

I commend you for wanting to help! Bless you.

A friend of mine's husband owns a nursing home with an Alzheimer's unit. I don't say this to suggest a nursing home, but I say it because I know she has told me they have a support group for families with Alzheimers and many of the people that attend the meetings are not patients of the facility or familys of the facility. I would recommend finding a support group RIGHT away. If you are near Bowling Green Ohio I can direct you to the support group I know of.

Unless you have been through it, no one can give you advice or help.

Blessings!

This will be very hard. Alzheimers patients need someone to always watch them. Try going to a Alzheimer meeting at one of the local hospitals. Also try calling a long term care facility that takes Alzheimers patients and ask them for recommendations of what to do. Make sure it is a good facility before calling asking advice. This should help get prepare. People with Alzheimer like to wander/walk even at night. They also like to be naked. Also understand that they do realize what they are doing, it is the diease not them. They also need a to have routine and not alot going on around them. So things will be less confusing. Good Luck and Take Care Jo

Hello S.. As a former HHA I took care of a women who had early on-set during the day while her son and daughter worked. You must baby proof your home, but that is not all. Rugs and toys from the rooms that she will walk on will eventually have to go. The women I took care of shuffled her feet instead of picking them up. I said numerous times, the rug needs to go, and one day, SPLAT the women fell on her back and hit her head.
The worse the Alzheimer's gets the more she will consume your life. Look into having someone come into your home a few times a week to stay with her and work with her. The Senior Center or an aging organization like that should have volenteers who would come work with her. Best of Luck and I admire your ability to bring her into your home and care for her.

S.,

I had a grandmother with Alzheimer's. By the time she was diagnosed my Aunt and Uncle had already taken her in. It was very difficult for them once she was diagnosed.

They have a tendency with the short term memory going first, they tend to have drastic mood changes and accuses things happening to them that aren't happening (ex, accused a family member of taking her life savings, but it was really still at the bank). Alzheimer patients especially as they decline require tons of attention. Also, as the memories start going further in the past, it can be very difficult, because there may come a time, when she does not remember the girls or either one of you and think that you are her daughter/son.

Also, some family things that may not have been shared with the family when she could remember it was a secret in her eyes, she may talk about thinking she is reliving it. Those memories are very true so be prepared for possible revelations that no one knew about.

About 5 years after my grandmother's diagnosis (moderate to severe alzheimer's) she became so severe, that my aunt and uncle had to make the decision to put her in a nursing home. They found a great one close to their house, and they visited her everyday. They just could not keep watch of her 24/7 at it progressed no matter how hard they tried.

Advise with marriage, is make sure you do find time for yourselves and be willing to be open about the feelings of the situation. As time goes on, feelings may pop up, that may cause some issue if it is not known or felt about early on. Just remember to understand each others feelings and communicate. I think that is why my aunt and uncle are still together, is they were able to communicate, and when things were close to being really hard to take, they both were willing to keep an open mind on how the other felt.

Sorry, if it sounds like a story, but there is so much more to say, and if you want, feel free to email me. However, just know, it is awesome that you and your husband are so loving that you are willing to take on such a huge responsibility.

Hope some of this helps.
T.

My grandma had some form of dimentia...They didn't call it Alzheimers back then, but still...it's all the same in the end. If she's in the early stages it won't be too bad. You just have to know she is there, is probably not ideal for babysitting, has to be watched around ovens and candles, etc. Give her little tasks to help her feel included and like she is contributing to the household. Try to be available to accompany her places like bus outings or car trips. It'll be like being her aide. The hard part is when she can't go potty anymore or if her personality changes, and she gets mean. (It may not happen, but be prepared.) Once she needs help with personal care and eating it will dominate your home. Your kids will be less needy by then, but at the same time they will also want to have their friends over to hang out, want rides to places, have games / teams to participate on and such. Those things take time, and you have to keep your own kids' needs in mind. The plus side is that there is still time for them to still form some fun and happy memories of times spent with Grandma. Happy memories are irreplaceable and priceless. My husband's aunt has Alzheimers. She lives at Deupree', but when she was able we took her on weekend trips to the museums, out to eat, back to our house to eat, pet our cats and to a few family parties. She loved every minute and thanked us profusely. We will never regret what we did for her. We taught our kids a huge lesson about being unselfish and family values, but now the aunt has bathroom problems, can't remember anything and no longer has quality moments. It's in everyone's best interest to just go for brief visits there now. She gets nothing out of it now. We made the most of it at the time though. P.

S.:

I have just become aware of this as well. I am, unfortunately, not able to care for my grandmother - and there are many familiy members that are involved - however, our situation happened rather sudden.

About 2 months ago, my grandma fell (collapsed) and fell backwards hitting her head, to which she fractured, causing her brain (your brain shrinks as you get older) to move forward, backward, then forward again causing her frontal and temporal lobes to be effected. The frontal lobes effect your personality. The temperal lobes effect your short term memory to an extent (i.e. did you turn on the water and forget; open the door and didn't shut it; etc.).

After having this, she is now in a nursing home trying to do rehab - but isn't cooperating. She is confused - can turn on personalities like a 2 yr old - has hullicinations, talks about things that has never happened, etc.

Right now we are trying to get her affairs in order. She isn't dying or anything, but I can tell you from seeing her, she requires 24/7 care due to her "2 yr old trapped in a 72 yr old body" situation. It will be an adjustment, but if you are patient enough you will do just fine.

I do know that there are hospitals (just like I read in another post) that offers classes and/or can get support or these sort of events.

Let us know what happens.
K. C.

Hello,

Hope that I can be of some help.My grandmother is 92yrs bless her little heart.NAd she has it.I have been a clenical tech and a stna, so you will know a little about me.But!! please look into going to a class about Alzheimer's because it will help you in the long run. you also need to (dont laugh) baby proof your home a little again because sometimes the mind will play tricks on you (her). but over all it will be a learning experence for you all and the children also.hope this helps you a little but if you have any more ?? please just ask away

S.,
I cared for my grandmother for the last 2 yeears of her life. She had AD and lung cancer. I moved from Florida to Dayton to live with my aunt and help care for her. I was alone with her during the day while my aunt and uncle were at work. It was a huge sacrifice but I wouldn't change it for anything in the world. It is a very challenging as well as emotionally and mentally draining situation but I saw it as a true blessing that I got to be there through this wonderful woman's last days. If her AD is just beginning to develop she may be very frustrated and not believe that anythihng is wrong with her. My grandmother would blame us and say we were trying to trick her or make her look stupid when she would forget things or lose track of herself. Basically we learned to just go along with what she thought was going on to the best that we could. This would make her feel more in control or her life and less emabarrassed. You have to remeber that even though they may be acting like a child and need to be cared for their desire to maintain their dignity and contgrol of their own life is still very strong. Treat her with love and respect and try to keep in mind that she really doesn't know what she is doing...if she's mean or difficult or arguementative let it go for a while and most likely the moment will pass and she will be fine in a short while. Please feel free to keep my name. I would be more than happy to talk to you anytime you have questions or just need to vent or share stories. Good luck and I admire you so much. You are truley a wonderful person for taking on this great responsibility.

Good luck and take care,
L.

I really commend you for wanting to help. Unfortunatly, the disease only gets worse. The intial stages won't be bad, but you will ultimately need to do something. She will either need a private nurse, or to be placed in a home. Though she is in the initial stages, she will still need someone there most of the time. This is basically going to be a full time job for your family. My friend worked with Alzheimer's patients and it was really sad. Most of them had no family visitors and they can get very aggressive and mean. One man chased my friend around the room and he punched another nurse in the face. So, my advice is to contact some places and she what help you can get.

I work in an all altzheimers community in dayton. Yes it is a home but we have information for people who want to keep love ones at home. I recomend you visit the dayton alzheimers chapter. It is located on summit Glen road off of 741 by the dayton mall. They have support groups and activities that your love one can do. They are very helpful. I can get you there # if u would like. Also you could call WoodGlen Altzheimer commuinity and they have support groups. The most important thing to remeber is sometimes its the body of and old woman in the mind of a child. I hope this information can help.
B.

You may be taking on too much S.. There most likely WILL be a time when she needs professional care, so prepare yourself (financially, emotionally and physically) for that too. Now that she is coherent, it is time to get all of her plans in order. You and your husband need to see an attorney and get her to sign over Power of Attorney to you so that you can help make decisions for her at a later date when she is unable. Make sure she has a will AND a living will, turn her checking account into a Living Trust so that you can have access to it when you need to pay for her and make sure you know what she wants for the future. It's great that she is able to stay with you while she is well, but like I said before, there WILL be a time when she needs professional care, so discuss that amongst yourselves too and decide what to do BEFOREHAND. In the meantime, you need to help her get financially organized so that you can take care of her for the long haul. She SHOULD NOT ride the bus...one day she will get lost and not come home. You (or an able-bodied friend or relative) are her safest and ONLY form of transportation. Alzheimer's patients go in and out of reality, so she will start talking a lot about the past and very little about what just happened yesterday or five minutes ago. Eventually, they get violent, paranoid, controlling and fearful, and then she may not be able to dress herself properly and may soil her pants, so when that time comes, it is best she be with a professional. Your heart is in a good place, but you HAVE TO PLAN for the near future and she needs to be considerate of you and your husband as well.

L. ;-)

I'm an activity director at an assisted living in Cincinnati. We have a lot of Alzh. in the building. I have seen what can happen to marriages, siblings, and families when one person takes in a family member with Alzh. It is not pretty. People fight like crazy. Over money, care, and health. Alz. wears the caretaker out. It puts stress on you, your husband, and your children. If you are going to keep her at home. Enroll her in Safe return. You never know when she will want to take a bus ride and not be able to get herself home.

I'm so sorry to hear about your Grandmother. You are so kind to want to take her into your home. I would contact your local Area Agency on Aging for help. You can probably care for her at your house for a while, but as the disease progresses, you will likely need to find an Alzheimer's facility that is secured. One of the biggest problems with this disease is many of its victims wander. You will need a place that can offer her that security. I have worked as a social worker with Alzheimer patients for several years. Please contact me if you have any questions. I went through the same thing with my own grandmother several years ago, so I have seen both sides of the care giving issue. Best of luck to you and your family.

Hi S., while I have not directly cared for my grandmother that had Alzheimer's, I did watch my mom and aunt try to do the same thing you are doing and it was very, very difficult and taxing on both of them. My grandmother was a lovely person inside and out, my grandmother moved in with my aunt, and my aunt worked in the day time so they had a home health nurse come out daily to fix her lunch and check in on her, we didn't trust her turning on the stove and forgetting to turn it off, etc. This worked for a couple of years until she unlocked the front door and decided to go for a walk. Thank goodness it was on a weekend and my aunt quickly saw the front door open and my grandmother gone, she had wondered down the street confused and asked a neighbor if she'd seen a friend of hers (which passed away years ago.)

After that incident, my mom and aunt took my grandmother to adult day care in the day and picked her up in the evening. It was inevitable and only a matter of time that we had to put her in a home that could constantly watch and care for her because we were too afraid she'd hurt herself unintentionally or wander off in the night. It was very scary and you don't want to see a loved one "go to a home" but after much investigation into several "homes" we did find one that was close to home so we could go visit several times a week with her and still take her places with the family, and they had a very warm and caring staff and enviornment, when it was all over, we wished we had gone that route a long time ago to save everyone the stress early on deciding "what to do." It is a hard decision, and only you know what is right for your family, but this is what worked best for us. My grandmother passed away in 2003 a month after my daughter was born, and I truely believe she wouldn't have wanted to live any other way knowing the illness she had, that she would have been ok w/us putting her in full time care and being close by to her.