Hannah Josephine Lindberg 1918 - 2010, Hannah's Journey - Final Part (A journal of my mother's affliction with Alzheimer's Disease)

If any of my readers of this blog know about my articles about Alzheimer’s Disease and on Examiner.com  writing articles of information and resources for eldercare as the Pittsburgh Elder Care Examiner, you may be aware that my mother, Hannah Lindberg has been a victim of Alzheimer’s for the last three plus years. 

Hannah has ended her struggle with Alzheimer’s as she passed away on Jan. 25, 2010. She made a more drastic turn for the worse over that last couple of weeks and we had visited her the day before she passed. It was as if she waited to see us one last time. We thought, during this visit that her end would come soon, but that very night, she passed away, peacefully, in her sleep.

This is a time of great sadness as well as great joy as we are so relieved that she is no longer suffering the constant living nightmare. I like to think that she is back with my dad, who passed 20 years ago and they are as they were in their twenties and in that new young phase of love again.

Much of my article writing has been about how this disease is basically an issue of what I call, “The Silent Generation”. These are victims of not only old age, but of the many forms of Dementia which affect the brain of so many older people and therefore has long been thought of as a natural progression of growing old, who can not speak out for themselves. They need us to speak for them!

Dementia, of which Alzheimer’s is one of the most common afflictions, is not part of the natural aging process and this has allowed this issue to be not given the necessary attention of by the majority of people in this country and around the world. This is just beginning to change as more and more of the largest segment of the population, the Baby Boomers, are now entering a phase of their lives when they are either caring for aging parents who are victims of Alzheimer’s or being directly affected themselves by it.

Here are some drastic facts about Alzheimer’s Disease:

• As many as 5.3 million people in the United States are living with Alzheimer’s.

• Alzheimer's and dementia triple healthcare costs for Americans age 65 and older.

• Every 70 seconds, someone develops Alzheimer’s.

• Alzheimer's is the seventh-leading cause of death.

• The direct and indirect costs of Alzheimer's and other dementias to Medicare, Medicaid and businesses amount to more than $148 billion each year.

These are just a few of the facts in our new report, 2009 Alzheimer’s Disease Facts and Figures.

(source: Alzheimer’s Association)

This issue needs all of us to spread the word and tell our government to do more funding into the support and research of this terrible affection that is basically like living a 24 hour nightmare in the victim’s mind. My mother has had the good fortune of living about 88 years of great physical health. She only had a few minor incidents in all of those years and rarely had to go to a doctor. After Hannah sold her home a few years ago and moved into a retirement residence, she took care of so many others in the residence who needed occasional help. She sat with others who were lonely or made sure they took their medications and picked up their daily newspapers from the lobby. Hannah was so blessed to have her health, but her mind started failing her more than three years ago. As many families who face this with aging parents, we were lost and knew nothing about Alzheimer’s or where to go, although we had known about grand parents who had it, but we ignored it as old age as well. Doctors are usually the first resource and in the past, many have been of little help, other than prescribing the current drugs that do not cure, but may possibly slow the progression of Alzheimer’s.

Due to going through all the phases of dealing with aging issues with my mother, I learned that there is a great deal of help out there to find out where to go for help with all the issues of elder care. You can find out a lot of information by going to my homepage at Examiner.com at:
http://www.examiner.com/x-7548-Pittsburgh-Elder-Care-Examiner

Make sure you scroll down the page to find all the resources in the lower right corner of the site!

Now as the Boomer generation is facing this as an issue of which they are directly affected, we are raising the public awareness of Alzheimer’s Disease, but there is much more to be done.

You can tell your government representatives by clicking here:

http://www.kintera.org/siteapps/advocacy/ActionItem.aspx?c=mmKXLbP8E&b=213027

You can make a general donation at the Alzheimer’s Association website:
http://www.alz.org/index.asp

Or you can help me raise funds by donating, in Hannah Lindberg’s name or anyone you know who is a victim of Alzheimer’s, to the Memory Walk that I will be attending in my local community this fall, by going here:

2010 Alzheimer's Memory Walk

We love you Mom & Dad and miss you so much, but you are part of us and all of our future generations. You gave us our lives and did all that you possibly could to insure we had a wealth of blessings, happiness and love. We will continue to pass that on to our children, and their children’s children.

Hannah's Journey - Part 8 (A journal of my mother's affliction with Alzheimer's Disease)

This is a journal of events that my mother has been going through since 1989 and leading to her eventual stay in a nursing home. In order to keep each part of the journal I have been keeping over the last year and a half brief, I will post this journal in parts, as I entered them. All of these postings can be found in the folder in the sidebar called Hannah's Journey.

----04/08/2009 - I have not added anything to "Hannah's Journey" since August 28, 2008, as my mother's health has remained relatively the same. She is slightly more confused which shows in the form of random sentences of different subjects running together. This makes it difficult to determine what is accurate and what is not. She may make a statement that she had such a terrible day and that someone slapped her across her face. We can't really discount this a completely false as there have been news articles concerning other public nursing homes in the Pittsburgh area, about abuses. There was a news item of some workers in question at another facility related to the one my mother is in, but there has been no evidence that there have been similar occurrences where she is. It is possible that another residents may behave abnormally and have not been seen by the staff. My own mother was, at one point, restricted from using silverware as she threatened to harm others. In their nightmarish state, these types of behaviors do occur. The best we can do is continue to visit, question and speak to the staff about anything we have questions about. It is a terrible, terrible thing to go through, for the elderly themselves and for their entire families!

As a member of the nearly 80 million Baby Boomers going through the various life changing issues of getting older, I have been being watching my mother slip into the effects of Alzheimer’s Disease over the last year and a half. This led me to begin a quest of researching what this disease is all about and what we all need to do to prepare as we see our parents living longer, but not necessarily healthier lives. The numbers of aging adults becoming Alzheimer victims is rapidly growing, not only due to longer life-spans but to the numbers of us approaching our senior years.

Here is a short list of some important things to better prepare families with aging parents:

1. PREPARE - We ALL need to prepare ourselves and our parents for the side effects of living longer lives. Families need to sit down and talk about these issues as future caregivers of our aging parents.
2. SEEK HELP - Do some research on what resources, such as The National Society on Aging, and in your local community to support seniors. This involves not only financial but things such as what are the best caring places, retirement or nursing homes in your area.
3. DECIDE & DO - Once you have some ideas about things you need to do about housing and care, make a list and sit down with your aging parents and calmly explain your concerns in a caring way about their lifestyles and what EVERYONE wants to do to help. Hopefully, if this discussion occurs early enough, while the senior can care for themselves, it can be discussed as ways to help them live the lifestyle they want, whether it be desired to live with someone or independently in a retirement home or the home they currently live in. There are many resources that can help seniors live in their current homes and receive care that is covered by their insurance, medicare or medicaid.
4. ACT - It is one thing to think about all of this, but quite another to actually begin the process. If a family has done the research and had the discussions with their elders, then actions must occur as soon as possible before things like falling, accidents or disease begin. Being prepared will make all of these issues much easier to go through, although it is NEVER easy to get old, but at least being prepared can prevent worse case scenarios.
5. FORGIVE - As we see our parents undergo the many phases of aging, we need to remind ourselves to go easy on them as well as ourselves. For example, Alzheimer’s can turn a loving parent into a totally different person who may express their fears in bouts of anger, perhaps even violent at times. It is very difficult, but we have to remember who they were, the sacrifices they made for their children and that these actions are just random, unconnected thoughts in their brains, much as dreams or nightmares. Lastly, as we must make hard decisions about our aging parents lives, we must remember to forgive ourselves as doing the best that we can and are taking the heavy responsibility of getting them the best care that we can!

Hannah's Journey - Part 7

This is a journal of events that my mother has been going through since 1989 and leading to her eventual stay in a nursing home. In order to keep each part of the journal I have been keeping over the last half year brief, I will post this journal in parts, as I entered them. All of these postings can be found in the folder in the sidebar called Hannah's Journey.

----07/28/2008 - It has been quite a while since I added anything more to this journal as there is really no large change in my mother's condition. She continues to live at a nursing home that is subsidized by the government. One amazing fact is that Medicaid is supposed to take over her retirement and social security money as help toward her care. Since she has been in this permanent facility, that paperwork has yet to go through. I continue to save her income as i know they will eventually want it from May of 2008 and I continue to pay her medical insurance that she has always had. I can't imagine what takes so long for these things. I will make more inquires this week as I am sure it is hung up somewhere along the way. It is not a huge deal as her income is being saved but I would just like to have it cleared up so that there is no mistaken time lag of who pays for what.

Hannah's condition continues to physically good but her mind has it's good and bad days. So far, she does recognize her family members, but not really anyone else and it even takes her a few moments to remember our names. For a period of about one month, they tried a new medication for Alzheimer's and it made her very angry, especially to the people caring for her. On a couple of occasions, my mother spoke language that we did not even know she knew and she frightened some of the family to not go back and see her again. I spoke to her doctor and the nurses did as well and they discontinued her on that med and she greatly improved, as far as her personality. Now she is almost herself and the family is visiting regularly again.

It is a VERY hard thing for all of us to do to go and visit her. We just MAKE ourselves go because we know we need to but the place is so very depressing! It's not the facility, as they keep it clean and the patients seem well cared for, but it is seeing and knowing that there are just hundreds of thousands of elderly people all over the country that are just sitting and staring and seemingly waiting to die..... it leave me speechless to even comment on what is occurring now and what hopes or hopelessness we all face in our futures. If we end up being physically in great shape, will our minds be there to enable us to have productive and happy lives.... or will be fail in physical health and not reach the age we all want to???

Here is hope that medical research will keep our minds in good health while we struggle to keep our bodies in good shape.

Hannah's Journey - Part 6 (Still hopeful?...not so much...)

This is a journal of events that my mother has been going through since 1989 and leading to her eventual stay in a nursing home. In order to keep each part of the journal I have been keeping over the last half year brief, I will post this journal in parts, as I entered them. All of these postings can be found in the folder in the sidebar called Hannah's Journey.

I realize that these postings are about something that is personal to me and may not necessarily interest many others, with the possible exception of some other baby boomer going through a similar experience and happening upon them. There are other reasons why I feel a need to write about my mother's story of the last events of this past year and possibly the ending events of her life. I chose to include them in my blog that has the theme of Baby Boomers, for that exact reason above.. that someone may find council in the fact that they are not alone or unique in learning about what it's like to get older. No matter what we all think or do or deny, we WILL INDEED go through some kind of experience of getting older and dealing with parents going through these things and finally even we will go through them. What we learn by talking or reading about the experiences of others will effect the course of events of HOW and when we go through the aging process. That is why I include this very brief story of what we have gone through.. and will yet experience, of which we do not have any knowledge or experience in dealing with.

Somehow, it seems that the sum of a person's life should be written down... should be told and read. No matter what kind of a person they were perceived as by others, there were reasons why they made the choices they did throughout their life

----04/01/2008 - This is not the final entry of this journey, but it feels near the end as it did not progress to where we had hoped... It appears that Hannah will not be able to participate in the Community Life program even though she was approved for Medicaid. Because her mind deteriorated quickly and she fell again in her apartment, she is now not able to participate in the orientation program. Because of a couple of weeks of time, my mother's new place to live is Kane nursing home in McKeesport, PA, which is her home town. This is a government run nursing home and it will take her social security and retirement from the Mckeesport Hospital as well as she is now on Medicaid. She is in some later stage of Dementia or Alzheimer's... (nobody seems to really know the difference.. they seem the same to me) and she now needs 24 hour professional care. She has only a small amount of memory left. She does know her immediate family, but may forget our names, but she does recognize us. That will probably only last a few more days or weeks. The less she sees us, the quicker she will forget. Physically, she is in good health and that's what makes this all seem like the worst disease to have. Your are physically here, but your mind is dieing. Eventually, if your body stays healthy, the mind will begin to forget how to keep your organs going and then it ends.. but slowly.

My wife and I visited her this past Sunday and she was in a state of panic. She thought "they" are recording her talking and that she "know" everything... has seen the end and beginning... We don't dismiss her thoughts but just try to reassure her to feel better and we are here for her. We can't even appear to disagree... but we just say, that if anything happens.. we are here. I have to comfort myself somewhat by saying to myself ... "her mind will soon forget her fear... at least for a while and move on to another subject. Even if fear returns, and it will, it is just a revolving state of random thoughts. The environment effects it... TV, people talking, her memories and fears of the unknown. It sounds SOOO AWFUL as I type it! I pray that she has some comfort in her random thoughts. She was not very religious though much of her life, although in the last half year, she does talk and pray often, so hopefully, she finds some comfort there.

The family just cleaned out her apartment at the retirement home she has lived in for the last 8 years or so. That was very sad! We are all taking mementos to have in our houses to think of her and better times. Some of the family, her great grand daughter and family is struggling, so they got much needed bedroom furniture and other things. We can all have our own memories when we look at and use these material things that were mom's.

You can see why this disease is unique in that everything progresses as if the loved one has passed on... but she hasn't... and that makes the sadness seem to drawn out as long as her life does. I keep seeing images of each time I last visit her in my mind and is brings me down.. and I have to snap out of it.. life moves on.

I will continue to add to this journal until the end of Hannah Josephine (Norton) Lindberg. She was and is a strong woman but one of distant and unattached emotions. She always seemed to be angry at life or spending so much time on what she didn't have that she never seemed to appreciate the moment she was in. What a shame and what a lesson that has been to me... I hope!!!

Hannah's Journey - Part 5 (Hopeful!...)

This is a journal of events that my mother has been going through since 1989 and leading to her eventual stay in a nursing home. In order to keep each part of the journal I have been keeping over the last half year brief, I will post this journal in parts, as I entered them. All the postings for this continued article can be found in the Hannah's Journey folder.

----01/17/2008 - I just thought I'd put what I hope is a kind of conclusion to this story of the changes my mother has undergone since November of 2007. It seems to be a miracle to my family!!! Maybe my mother's memory problems were aggravated by a combination of all the trauma of the hip replacement operation, pain medication in the hospital and other meds during the temporary assisted living home for 3 weeks, but during the holidays, she was with family and we eventually kept getting her off pain and some other anti-depressant meds that led to her basically coming back to nearly how she was before this all happened. We don't really know, but we are soooo thankful, that she seems to be almost herself again! She is currently still staying with my sister, as she is home all the time and we bring her to our house for weekends. We are thinking of trying to see if she can live back in her apartment by herself in the next week or so, with nursing, family members and other things to watch over her, to see if she can get back to being independent. We have kept her apartment during these few months for that purpose.

We have also found and began the process of getting into a absolutely fantastic program that is available to seniors who meet certain criteria, that is basically a day care program. It is really much more than that!!! It is a Medicaid funded program that will meet all of her needs as long as she wants. There are similar programs throughout the nation, but within Allegheny County, it is called Community Life. It takes about 3 months for approval... government red tape, but well worth it. It will give her things to do during the day, crafts, day trips, health care, they provide doctors, dentists, hearing, everything...

Hannah's Journey - Part 4

This is a journal of events that my mother has been going through since 1989 and leading to her eventual stay in a nursing home. In order to keep each part of the journal I have been keeping over the last half year brief, I will post this journal in parts, as I entered them. All the postings for this continued article can be found in the Hannah's Journey folder.

12/10/2007 - Well, right now my mother's progress is looking pretty good. We are going to take her (hopefully, permanently) out of the assisted living home and bring her to my house for the holidays. She has progressed physically to walk well with a walker, although she can probably walk without it, and she can do steps well. That will enable us to have her stay in her bedroom for the night and come down to our first floor during the day. We have bathrooms on each floor, so she will not have to go up and down stairs during the day. After the holidays, we are going to take her back to her apartment at the retirement residence where she lived before this all happened. We feel pretty strongly that she can function by herself. They do have emergency procedures there and we can get a nurse to visit to make sure she is getting her medication. We plan on having a party with her friends there when she goes back to make her feel welcome and home. We just have to take this one week at a time and hope that she doesn't fall again, because that will probably make her living by herself impossible.

This has been a learning experience for all of us!!! My mother seems to be as clear minded as she was before the accident, which was only sometimes confused and we feel that her medications will keep that in check and living back in her home will keep her mind going a lot better than the current assisted living home she is in now. It served it's purpose but it is easy to see that being with so many other elderly people who are losing their mind functions can only make anyone living there for a extended length of time, act the same.

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----01/07/2008 - Well, we made it through the holidays. We took my mother out of the assisted living home the week before Christmas and took her to my house for that week. She was soooooo, indescribably happy to be out of there!!! The home did have very caring people working there, but still was a dismal place, dreary, gloomy and not as clean as it should have been. We were glad to get her out. That week was not a good one. In fact, we were so consumed with her that it didn't even feel like Christmas. She had many episodes of acting totally out of her mind that I was sure she could only be taken care of by professionals. By the end of that week, we were at our wit's end with her waking about every hour throughout the night and talking out of her head... seemingly crazy!!! That weekend, we had commitments, like singing in church for Christmas eve. Previously we thought my mother would come with us to church, but with her behaviour and possibility that she may have to sit alone in the church while we sang, and her starting to act up again, we could not take her to church, so we took her to my sister's house for Christmas week. My sister does not work and has other family members there to help her with my mother. For the next two weeks, my mother showed some improvement but still many sleepless nights that my sister had to deal with.

Currently, we are just confused as to what to do.... my mother has shown improvement where she is herself and OK most of the day and is sleeping through the night sometimes, at least if she wakes, she may go to the bathroom and then go back to sleep. This makes us feel like she may not have to go to a nursing home permanently, but she really does not have the capability to live on her own, totally. At this point, we are getting UPMC home care nursing to come and help us decide, we are looking into some nursing homes and into a program called Community Living, which is a sort of day care program for seniors to enable them to live on their own or with family but go to a center during the day where they can receive medical, physical and mental care. This gives them better care and relief for the family while they are there during the day.

Hannah's Journey - Part 3

This is a journal of events that my mother has been going through since 1989 and leading to her eventual stay in a nursing home. In order to keep each part of the journal I have been keeping over the last half year brief, I will post this journal in parts, as I entered them. All the postings for this continued article can be found in the Hannah's Journey folder.

Nov. 27, 2008 - I haven't updated this for a while due to the Thanksgiving holiday and being preoccupied with my mother's transition from the hospital to an assisted living home. Hannah was in the hospital for a total of 2 weeks, where she did get full daily rehabilitation. There was a lot of confusion to our family because the social services person at the hospital had called us after about 1 1/2 weeks that my mother was there. She asked us if we wanted to transfer her to another rehabilitation location because if she progressed too far at the hospital, her insurance would not cover going to a second rehab center. She really led us to believe that we should transfer her because she would be able to get a longer amount of rehabilitation at another center. The real mix up happened when she said we would be fine to stay in the hospital over the weekend while the family discussed where we all would want her to go. After that weekend, on Monday, I called her back to tell her where we would like her to be transferred and she said that the person giving her rehab stated that she has progressed along to far to be transferred now. She further told us that we could only take her home or to an assisted living home where we would have to pay personally for her care. This all greatly disturbed all of us as we thought we had been misdirected in the whole matter and were going to lose out on insurance paid care her her. After talking to my mother's doctor, he clear the matter up and she remained in the hospital for that following week, getting the daily rehab.

This made a total of 2 weeks of aggressive rehab to which she responded very well. She was walking with a walker and able to climb several steps. The doctor told us the "rehab is rehab" and that she received the exact same amount in the hospital that she would have received anywhere.

So now, there was no real option to bring her to home as my wife and I work daily and no one else is in our home and my mother needed to have someone with her all the time for a while. My sister is scheduled to have knee surgery in a couple weeks, so she can not care for her and there were no other family members who could either. So, we moved her to a fairly good assisted living home in her town so that most family members could visit her daily. The home is not top of the line, but it is fairly clean and nicely decorated and the rooms are nice. We first moved her into a semi private room but have just had her transferred to a private room as it was only $15 more a day and well worth it. My mother was feeling self conscious about using TV, radio and the bathroom and the other women was not particularly being open minded and friendly. The private room should make her feel much more comfortable and we are expecting to only need to have her there for 2 to 4 weeks maximum.

The cost of this home is approximately $2,300 per month but they are billing us on a two week basis as her stay is supposed to be temporary. Also, in a few weeks, Anita and I will be on Christmas vacation and she can come and stay with us through the holidays. If all goes well, she should be living back in her apartment at the retirement residence in Jan 2008.

This has been quite a learning experience so far! We all knew it was coming but she has been so healthy and independent that we just didn't expect it yet!

Hannah's Journey - Part 2

This is a journal of events that my mother has been going through since 1989 and leading to her eventual stay in a nursing home. In order to keep each part of the journal I have been keeping over the last half year brief, I will post this journal in parts, as I entered them. All the postings for this continued article can be found in the Hannah's Journey folder.

11/12/2007

My mother's surgery, which was a partial hip replacement, went very well. She will remain in UPMC McKeesport hospital for at least a week more. She entered on 11/7/07, had surgery the next day and they have let her recover for the weekend, with a small amount of moving around. This week begins a full schedule of physical therapy, 3 hours per day, with the thought that they will have her eventually do all the things she could do before the accident, in other words, dress herself and take care of herself completely. The therapy team evaluates the patients on a weekly basis, so on Tuesday, 11/20/2007, they will determine the next steps. This will be either being released, kept for another week or transferred to another physical therapy center.

The type of health coverage you have determines the therapy path. My mother has adequate coverage that is allowing her to remain in the hospital when she had the surgery thus far. It may be the case that her health insurance plus medicare will have her remain there until she is completely recovered. My mother worked in this hospital for many many years and when she retired, she obtained a health care plan that was very good. It will remain to be seen if it really does take care of her for the remainder of this issue, all the way to full recovery.

(as this entry was very short, I will include the next journal entry that I made as well)

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11/16/2007

My mother (Hannah) has been in physical therapy every day this week, a total of 3 hours per day and it has been difficult for her. She is slowly showing progress but has been in a semi state of confusion and random thoughts for the week. Her doctor had decreased her pain medication, but it still has left her in a confused state for the entire week. As of today (Friday), she is being changed to a pain med that should not effect her as bad. This will make things much better as she has wanted to get out of her chair or bed when by herself which is not permitted at this point. It has also been difficult to make sure a family member visits her at least once a day, but we have done so for this week. She is much more calm and eats better when one of us is there.

It looks like she will need to move to another physical therapy location next week and we are beginning to look into where would be the best choice for not only her care but to make is easy for family to continue to visit daily. We know that it is key to her recovery that family members continue to visit to keep her spirits up and to insure she is being cared for and not neglected. We have been fortunate in that she has medical insurance and medicare that is taking care of her costs. We need to continue to monitor that!

One thing we have found out is that while she is in the hospital getting therapy, if she would be there too long and improve too much, when we go to transfer her to another location, her insurance would not begin again. This must be done as minor therapy at the hospital and then begin FULL therapy at the location she moves to. That is why she has to move next week.

I did contact my employment Lifeworks assistance help to gain access to advice from a elder care manager. They will locate a care manager who is familiar with the area my mother will be moved in, which is McKeesport and then the care manger will advise us on locations reputation, etc. They provide 6 hours of assistance which would normally cost approximately $200 per hour.

Hannah's Journey - Part 1

This is a journal of events that my mother has been going through since 1989 and leading to her eventual stay in a nursing home. In order to keep each part of the journal I have been keeping over the last half year brief, I will post this journal in parts, as I entered them. All the postings for this continued article can be found in the Hannah's Journey folder.

PART 1.

11/08/2007

My mother is 89 years old and has been relatively healthy most of her life. She is fairly active and is living on her own in a newer retirement building in White Oak, PA, which is near McKeesport, my home town. In the past decade she started having hearing difficulties for which we have gone through many attempts to find a solution; that's a whole story in itself. Also, during the last 10 years or so, she went from living in the house she and my Dad bought when they were first married (that my sister, older brother and myself all lived in until we each married) and moved out to her current apartment.

She continued living there on her own after my Dad died in 1989 and eventually we all realized that the house was getting hard for her to maintain. One day She fell down the stairs coming down to the living room and broke her arm and temporarily moved into my sister's house for a few months. I think this experience made her feel like she didn't want to be alone in the old house anymore. Eventually, a new retirement residence was built in her hometown and the rent was income based, so she was able to get in before the waiting list started developing. That was a lucky break and really made the whole family feel better about where she lived. Although she lived alone in her apartment, she made many friendships and enjoyed the exercise area, playing games, watching movies and the dining hall. It wasn't one of those top of the line retirement communities, but was really very nice for the money.

She has been rather healthy without any major issues until yesterday (11/7/2007) when she was walking down the hallway to the laundry room and fell and broke her hip. Luckily, her daughter-in-law was with her and called 911 and got her to the hospital. I am fearing that this may be such a major issue this time that a whole series of events may be forthcoming.

I will continue to add her progress and experiences to this blog as we go through this.